Today was the first day that both of the parents weren’t with Cristian for first time since diagnosis. This was tough for all us, parents and for Cristian. From our side it added a new layer of worry because of the unknown and “what if” scenarios. For Cristian there were times where he would ask for the other parent and not know why they weren’t there. We did our best to distract him and ourselves throughout the day. An upside is that we each got to spend a couple hours with Leena which was a wonderful breath of freshness. We each knew we missed her, and some time at home was just what we needed.

We are very fortunate that we don’t have to worry about care for Leena thanks to our wonderful parents. Leena has excellent 24/7 care and love at home. To Fitolio, Mimi, and GPa, our deepest thank you’s for being here to help us with everything as we go through this new uncharted journey. We literally couldn’t do it without you.

The doctors gave us some good news this morning in that Cristian’s Uric Acids are down in his latest blood test! We took Cristian off meds again today and will see if his body is able to self manage. Tomorrow will be another critical milestone on our path to getting home.

This morning’s Spinal Tap to check for leukemia cells in the spinal fluid went as planned, including another round of chemo. We didn’t get results back today, hopefully tomorrow. Afterwards Cristian was a bit grouchy for the rest of the morning until lunch time. We played a little but spent most of the time just trying to keep him calm or happy given the circumstances.

Once mom came to takeover for a bit, his mood increased dramatically. He even ate a good amount! This kid is going to turn into a chicken nugget!

Another big accomplishment today was that he used the potty and went #2! Don’t worry, no pics on this one haha. Constipation is a big concern at this point and a natural bowel movement means that we won’t have to put more chemicals into his body.

We did another parent swap in the evening to make sure we are each getting breaks and more importantly quality rest. Hospital sleep is more about short naps due to frequent checks from hospital staff and general stress/discomfort.

Wish us luck tonight…

Based on yesterdays blood work the doctors decided to stop administering allopurinol which is meant to keep Uric Acid levels down. Unfortunately, in the blood tests this morning Cristian did have high Uric Acids levels. Uric Acid is a byproduct of cell destruction and is very hard on the kidneys. High levels of Uric Acid can lead to kidney stones and other damaging affects. Because of this, the doctors have decided that we need to stay in their care until at least Wednesday. The goal will be for him to be off of allopurinol and IV liquids for 24 hours without seeing the high Uric Acid levels.

We also received results from the spinal fluid examination which was taken on Friday. The lab did confirm that there are leukemia cells in spinal fluid. This means that Cristian will need to have spinal taps twice a week until he has 3 consecutive clear results. Hopefully he reports back clear on the one tomorrow, and will only have 2 “additional” spinal taps.

We know that this process won’t be easy, and we know that the path to success is never a straight line. Even so we were very excited to be heading home today and hearing that we have to stay additional time is a blow to our already battered morale. To add insult to injury, starting tomorrow the hospital will only allow one of us to be here at a time due to Covid. This will be a trying couple of days for everyone.

I’m already looking for hiding spots so we can both stay here with Cristian!

Today Cristian also received another round of chemo. This was administered via his port while he was sleeping and we monitored him for any signs of discomfort or reaction. Luckily he took this round like a champ.

We also spoke with a dietitian today since Cristian hasn’t been eating much while here in the hospital. The meds he is on are known to suppress the appetite and the doctors want to make sure he still gets his nutritional needs met. This will most likely be achieved via some formula or additive, no talks of a feeding tube yet. Cristian must have overheard the conversation because later that day he ate a whole kids meal from Chick-fil-A!

Overall today was trying, both for Cristian and for us. On top of all that is going on here at the hospital, we have Leena at home which we miss very much. We know that she is getting excellent care from Fitolio, Mimi, and Tom, but we can’t wait to have both kids together.

Tomorrow we know we will have a spinal tap in the morning, and only 1 parent through the day, but hopefully a bit of silver lining with clear results from his spinal fluid.

Last night wasn’t very restful for Cristian since he decided to stay up late and then had multiple interruptions through the night with nurses coming in to check on him. That made Cristian more likely to have melt downs and took longer for him to calm down. Hopefully this was a result of just little sleep, but could also be from the steroids beginning to kick in. Time will tell.

Today went mostly as planned and we were able to relax a little. To help Cristian cope with the situation and everything that has been going on, today we focused on trying to give him control of what we did. With doctors and nurses coming in wanting to poke and prod him, not having the ability to make decisions has been tough for him. So today we did a lot of playing with his toys and were up moving all over the room. Play time is a big part of being a kid so it was very good to see him get some of that in today.

One set of decisions he wasn’t able to make however was taking his meds. This will be a transition for him because he has only ever taken a gummy multivitamin each day and those taste great compared to his new medicines. Luckily we are not above bribery and candy is a powerful motivator. It still took some convincing and we were patient to let him decide when we was ready to take them. We will find a better reward to use as we don’t want to be pumping him full of sugar, but for now we will take whatever wins we can get.

Constipation kicking in

Tomorrow we are set to get some “training” on what we need to do once we are transitioned to home. We are interested to hear about new hygiene habits we will need to develop and how his younger sister will impact things. We have heard already that they doctors do not want Cristian to isolate from friends or other children, so hopefully there won’t be anything too drastic that needs to change for home life.

Tomorrow will also be the day where we find out if we go home, or if we need to stay longer. This is not because of fever (he doesn’t have one) but because of pathology results from this be of the operations from Friday where they extracted fluid from the spine for analysis.

If there are leukemia cells in the spinal fluid then we will stay another day to allow for a follow up spinal tap. This also means that Cristian would need to have 2 spinal taps per week until he has 3 consecutive tests with no leukemia cells. For future spinal taps Cristian will be put under with anesthesia but will not require a breathing tube or have residual puffiness like he this week. That is due to the spinal tap itself being a less invasive procedure which takes less time.

As we are going through this journey we know there will be challenging days and times where we are feeling down about our progress. To help get us through these times we’ve created a page called the “Encouragement Wall” that we can read to help lift our spirits. It would be very much appreciated if you could head over there and add a little note or prayer that we can read later.

A huge thank you to everyone who has reached out to us and left comments on the site. Seeing all of the love and support for Cristian is very heart warming and means a lot to our family. We are very fortunate to have so many caring people around us.

Yesterday was a big day for Cristian, and his body needs a rest. Today was intentionally a lazy day with only meds.

Following yesterday’s events Cristian was a bit resistant to any requests for checking him. Whether from the Doctors, or us parents, things took more convincing and patience today than previously. We are working to make sure that we are giving him extra love and understanding.

The physical therapist stopped by to check how he was doing. Following the procedures he had it is not uncommon for children to have standing and walking issues briefly. Cristian did display some of these issue, but as mentioned above it could have just been him resisting any external requests. The physical therapist is planning to stop in the rest of our stay and make sure Cristian is able to stand and walk without issue, so we will try again tomorrow.

We are continuing to monitor his temperature to make sure he doesn’t have a fever. We SOOO want to go home with him on Monday and get him back to the comforts of his own house. Luckily things have stayed normal without even a low grade fever.

Swelling also went down today as the anesthesia works it way out is his system and he spends more time upright. He is also getting rid of fluids effectively which means his liver is working correctly. He is on a lot of extra fluids via IV to make sure this doesn’t become a problem, all signs are good so far.

In addition to the swelling improving, we also got an update that his white blood cells have gone down which is a good thing! When we initially took him to the ER, his white blood cell count was 40k (normal is 5k) but this mornings blood test came back at 20k! This big reduction is a super positive sign and one of the big things that we will be monitoring during this process.

After his nap Cristian was a bit grouchy (who can blame him) but after a little bit of food he was up playing around. It was really great to see him having fun with the toys we brought him and the gifts he has received from the hospital. He was up walking around, talking, generally acting like the little boy we are used to seeing.

Today also had a lot of meds, which for the near term future will be the new normal. Taking meds is new to him in general and having so many to take has been a challenge. Thankfully he is getting more accustomed to the process and fighting less. We hope this trend continues…

We are expecting tomorrow to be like today, no major activities and continued recovery from his operations. We are very hopeful that Cristian won’t develop a fever and that we will be able to come home on Monday!

This day also began early, earlier than they day before actually. Around 4am blood was drawn to determine if Cristian would need any blood treatments prior to his surgery. As this is a blood cancer, there are several ways that your blood may need assistance in order to successfully make it through something traumatic like surgery.

When results came in it was determined that platelet count was low which increases his risk of excessive bleeding. To correct this issue for the surgery he was given platelets via IV prior to surgery.

By 9am we were headed to the IR area of the hospital. Here we met with the anesthesiologist who went over some medical background information and discussed what she would be doing. We then met with another surgeon who would installing his “port”. The entire process was estimated to take about 2 hours.

With the 3 operations Cristian was set to have, he was given an general anesthetic. By the time he left the room the meds had started to take effect and he was a little loopy laying in the hospital bed.

The next we saw Cristian was about 2.5 hours later while he was in a recovery room. The procedures had gone according to plan and they were waiting for Cristian to wake up as the anesthesia wore off. We made sure that we were at his bedside when he first opened his eyes along with some of his favorite toys. After about 30 minutes Cristian was half awake and trying to play with his toys. We were then transported back to the room.

Prior to the surgery we were told that Cristian would be groggy the rest of the day and sleep a lot. This turned out to be the case. Once Cristian did was up he was hungry and thirsty and even used the bathroom, all very good signs. He did have some swells which was a result of the operations and the high amount of fluids which were being administered to him. Even knowing this would happen, it was more than we expected.

Having Cristian sit upright, as well as urinating both helped to begin to reduce the swelling in his face. Some of the swelling did more to his hands, legs, and feet but overall he was looking much better by the time he fell asleep (as I’m writing this post).

As the day turned to night time it was time to remove the IV from his arm and begin using the port which was installed during the day. This was great because his IV was installed in his elbow crease and prevented him from using his right arm. The removal was a little painful and he did bleed a little longer than expected, but after a few minutes the pain had subsided and the bleeding stopped.

Now utilizing the port it was time to do his first dose of chemo. Technically he did receive a dose of chemo during the spinal tap earlier in the day, but this was his first done via the port. Luckily Cristian didn’t have any negative reactions and was asking for more food and liquid shortly there after as he played with his toys in the hospital bed.

Later that evening the nurse stopped by to drop off his night meds. Tho consisted of the liver protecting drug that he has been receiving 3 times a day since admission, as well as his evening dose of steroids and antacid. Needless to say it took much patients and coaxing to get our 4 years old to take all these meds, but by bedtime he had taken them all and kept them down.

The next 2 days we are planning on monitoring his vitals and continuing his new medicine regiment. We are also watching his temp very closely as any fever over 100.4 will require us to stay in the hospital for the initial 28 days.

If no fever then we should be able to go home on Monday! We are very much looking forward to having him at home where he can relax and play with his little sister.

Around 5am a small team of hospital staff came into the room to get a blood sample to be sent off for further analysis. The plan was to take blood early in the day, have the samples sent offsite for study, and to receive results confirming what illness was present.

This day seemed to take forever. The staff was very nice and helpful in making sure Cristian was as comfortable as possible. Even so the waiting was excruciating with no way to speed up the process. Like any parent we were hoping for news that would somehow make it all go away with a false initial diagnosis or some other non-cancer illness. Unfortunately that news never came.

Late in the day we met with the oncology team who was assigned to help Cristian and they gave us the news. Cristian was diagnosed with Precursor B-Type Acute Lymphoblastic Leukemia. We discussed what this meant and what the path forward usually looks like.

The silver lining (is there such a thing in this situation) is that the specific type of leukemia Cristian has is the most common in children and also has the highest (+90%) survival rate when property treated.

Having done a little amount of research on the different types of leukemia during the day, we were somewhat prepared with questions and what to expect. The team was great in answering all of our questions and was actually able to provide a sense of calm or optimism about our new normal. They also discussed a couple clinical trials that were available for Cristian based on his circumstances, and asked us to review things to see if we were interested in participating.

Well now we knew the situation and were starting to see a plan come together. I won’t lie and say we felt good about the situation because that’s impossible. The next steps were to have 3 procedures the next day and start the “Induction” phase of treatment.

The 3 procedures Cristian is set to have are standard for starting treatment. These will help provide more information to dictators around how wide spread the leukemia is in his body, and make administering IV meds easier without having to place a bee IV each time.

• Bone marrow biopsy (hip bone)
• Spinal tap (spinal fluid sample)
• “Port” installation (right pectoral)

While the team performs the spinal tap they will also be injecting chemo directly into the spinal fluid as this is a typical location for leukemia cells to gather.

Over the past couple weeks we had noticed that Cristian’s belly was becoming more and more pushed out (distended). We thought that possibly this was a digestive issue, posture, or just part of a growth spurt. On 2/17 his belly was distended the most we had ever seen including the top portion below his rib cage.

With this new development, mom felt it was time to reach out to the doctor. Following a remote session with a virtual doctor we were directed to schedule an appointment with Cristian’s primary care doctor. Unfortunately his primary doctor was closed due to local weather conditions.

Not wanting to wait further, we decided it was necessary to go to the ER and identify what was causing his abdomen to be so distended. We were quickly admitted and discussed the issues we were seeing. Cristian has been pooping normally and was not complaining of pain. The ER doctor wasn’t immediately sure as to the cause of the problem so he ordered a blood draw for analysis.

Some time later the doctor came back into the room and broke the news that they found abnormalities in his blood sample and that we needed to be transferred to a larger more specialized hospital. He wasn’t able to say for certain, but he felt fairly confident that this was some form of Leukemia.

As any parent can imagine this is a worst nightmare situation at this point. We were both in shock and crushed by this news, and the rest of the night was a blur between the ambulance transport and admission to the new facility where we were checked in.