Wow what a month it has been! We are enjoying this summer more than we could have thought. This is what life is (mostly) supposed to be like. We have been trying to be active with Cristian to make up for the time lost last year, two if you include Covid. We’ve been having play dates with friends, visiting playgrounds, and even threw a pool party with a bunch of his cousins. We even had family visit from out of state including Nana and Aunt Cynthia who we haven’t seen in years. Cristian even got his hair cut! It was getting so long that he needed one. First fair it since 2020, looking good little man!

This past month also included Father’s Day which was extra special this year. In addition to spending the day together as a family, we made a truly unique memory thanks to a local group called Hope Kids. This group helps families that are going through situations like ours. For Father’s Day this year they organized a photo shoot a couple weeks earlier for the child and father to take pictures. They even let Cristian take a photo. Admittedly the photo was supposed to be of dad but he was more interested in his cars. Haha typical Cristian! Fast forward to Father’s Day weekend and we got to see the photos. They came out amazing and turned out to be a very special moment for Cristian and myself. The photos were so good (not just being biased) that they used one of the photos to advertise the event.

This past month did include the start of another 3 month cycle, which meant a spinal tap and one week of steroids. The spinal taps have historically slowed Cristian down for a day or so, but it’s the steroids that really drain his energy. It was unfortunate timing with Mimi, Gpa, and Aidan visiting. But the family visiting actually helped give him some extra energy due to excitement. Once the steroids finished he was back at 100% within a few days.

On a much better note we recently received a bit of a miracle from the Make A Wish foundation. Earlier this year we were nominated to receive a wish from someone at the hospital and talked with them about going to Disney World. At the time they had a policy that required everyone in the family, including Cristian, to be fully vaccinated for Covid. Because of Cristian’s treatments he is unable to receive any vaccines. This was a huge bummer because we believe Cristian (and Leena) would love that experience. After hearing this we prayed for a change of the policy. Well the Lord came through and last week we heard that the vaccine requirements have been dropped and we are able to move forward with the wish! We haven’t received any specifics yet but we hope to be going before Cristian starts school next month.

While we have made it this far on the rollercoaster that has been his treatments we still have a ways to go. We expect the remainder of the time to be like the last 6 months, thank you Lord. Based on his current treatment plan that means another 18-24 months (12-18 when we move him to MD Anderson). We pray that the timeline gets shortened so we can put this behind us!

We continue to be extremely thankful to the lord for everything he is doing for our family. We went through a dark period but he helped guide us through it and continues to watch over us. Through him everything IS possible!

Well not sure how else to say it, but we are enjoying spring time and feeling great! Don’t think we had a blog start off like this yet and that’s probably because Cristian hasn’t been this good since we started the blog. He is full of energy, laughing, playing, and learning new things. Such as amazing time!

What we see in Cristian now is a stark contrast from this time last year. Looking back we were in and out of the hospital with fevers and treatments. It was a dark place, we are grateful that God gave us strength and healing to get past it. All the more reason for us to celebrate the good times now!

Did I mention that Cristian is learning new things and having new experiences? Over the past month we have had several firsts including a trip to the dentist, touring schools for kindergarten in the fall, and trying lots of new foods (at least one bite haha). These things are common for kids his age to be experiencing now, we are ecstatic to be part of that group!

We have had a couple of doctor visits since our last update including one spinal tap. All of them have been planned visits and he has taken them like a champ!

Having been on this journey with its downs and ups, there is no doubt that God is in control. We are thankful every day for the protection he has placed over our family as we go through this trail. Praise to the highest!

We are happy to report that we have wrapped up the week of steroids as part of this cycle! Cristian did great with his spinal tap last week and in taking his extra medicine, although we did have to bribe once or twice. The steroids have an expected side effect of moodiness, tiredness, and weight gain. We can confirm all of those were present this time. But nothing some loving patience, nap times, and bacon couldn’t take of!

One big thing we have noticed over the past couple week is that Cristian is learning new words and generally has better behavior. Not sure if this is just a natural maturity/growth cycle or some how related to not being on tough chemo but it is really great to see.

Another recent discovery of his is that he has found out how to take photos on my iPad today. Normally it is used just to FaceTime with Mimi & GPa or as a baby monitor, but somehow he got it today and started taking pictures. Since this iPad is associated with my Apple account I soon found my photo stream flooded with fun photos of him playing.

Speaking of fun times we are excited to be off steroids and having more energy to play with friends and family. We have several little things lined up over the coming weeks that will get Cristian out of the house and interacting with other kids. The more play time we can get, the better!

Thank the lord for watching over our family and providing us with the strength to get through the darkness. We are not doing this alone and he is guiding our family. We are enjoying our wonderful little family and are grateful every day to be home and not in a hospital.

Our little boy is back! Since our last update (sorry it’s been a while) Cristian has been having an absolute blast. He consistently has great energy levels, his hair is growing, and he has been able to have new experiences. This is the closest to normal we have seen in over a year.

Some of the most fun he has had has been lots of playtime with friends and cousins. Every time we go places Cristian always points out a playground or park we drive by and asks to get down to play. Good news is that now we are able to go for play time. We had a little play date with some friends kids at a school playground, we had to pry him and Leena off the slide to get in the car. We have also had cousins over to the house on several occasions. Cristian is quick to jump in with the his “friends” and run around screaming like a little 5 year old. It doesn’t get much better than this.

All this time at home (and not in the hospital) has allowed for more play time with Leena. The two of them have grown closer and are often seen running around the house together. Granted some times is it not a playful moment, but that’s what siblings are supposed to do, right? Haha

One little bump in the road we’ve had recently is a runny nose and fever scare. Blame it on the weather or allergies, but something has him congested. The first night he was warm (temp just under 100), but didn’t get hot enough to where we needed to go to the hospital. We were on edge that entire night, taking his temp every 2 hours and preparing (at least mentally) to go for a 10 day stay at the hospital. Luckily the morning came and his fever had gone away. Since this he has had a normal temp and good energy, but also a runny nose. And because “sharing is caring”, his little sister now has the same runny nose. Joys of parenting I guess.

Looking ahead we are preparing to start another cycle next week. This will be the same set of treatments Cristian has had since January, starting with a spinal tap and 5 days of steroids on top of the daily chemo. The steroids have knocked him down in the past but hopefully his body is strong enough to keep him up and playing.

We don’t know why we are on this path but every day we thank you God for all the blessings he is giving our family. He has helped us get through the darkness and is protecting our family as we go forward. We thank everyone for the support and continue to ask for prayers.

It is astonishing how much things can change in the course of a year. This time last year our family was reeling from a freak snow storm and wishing Mimi and Gpa a safe drive back to Colorado, not knowing what was in store. Tonight marks one year since we took Cristian to the ER and received the horrible news. The pain of that night is still fresh. But as parents you must rise to the occasion for your children and do what needs to be done.

As you’ve seen on the blog it has been a rollercoaster ride all year. Cristian has gone through so much, we don’t even want to think about it all. We frequently find ourselves astonished at how strong he is, having gone through this journey and still marching on. We are also constantly on the look out for ways to try and add joy to his life in an effort to offset all the bad. Luckily we will have that opportunity as he grows up.

Having made it through the bad stuff on the treatments we are keeping up the fight. Cristian has come so far and we won’t falter now. Each day Cristian is happier and stronger. Just today I pointed out how happy I am to see him with so much energy, bouncing all over the place just like a kid his age should be.

Thank you all for the support you have given our family. I know this is said in every post, and that’s because we are truly thankful. This is by far the most difficult thing we have ever faced and there is no way we could do it alone. From commenting on the blog, phone calls, gifts for Cristian, play time when he has been strong enough, all of it, we are eternally grateful.

At the same time we are thankful to God for watching over our family as we go through this trial. We don’t know the reason why Cristian was given this disease but we have faith that there is a purpose and you will protect us. Thank you God for blessing our family.

What an awesome time we are having! Cristian has been feeling wonderful the last few weeks and enjoying life. We have had no issues with him other than having too much fun and refusing to go to bed at night. Whether at home or out and about, Cristian is ready to take on whatever stands in front of him.

To help make up for the crummy year that we have had, COVID isolation compounded by the leukemia, we held a birthday party for Cristian. This party was at a child’s play place with many of his family and friends. It took him a few minutes to figure out what to do with the large indoor playground but by the end of the party we had to literally pry him away. So much fun!

Today we took a trip back to the doctor for a check up and a spinal tap. Everything went smooth and the blood work came back spot on. The doctor was glad to see him doing so well and told us we can expect more improvements as time goes on.

God is doing great work to bring our son back to us and acting like the little boy we knew was in there over the past year. We are eternally thankful for his blessings on our family.

Today Cristian turned 5 years old! This past year has been rough to say the least, which makes today even more special. We spent the day doing some of his favorite things including walking around the mall which we haven’t done since pre-Covid. Surprisingly enough he remembered the place and his favorite spot. He is so smart!

While at the mall we stopped off at the Lego store. He has recently discovered love for legos so today we let him pick out a couple. Since things have been hard this year we definitely went overboard, and that’s ok. We will continue the celebration next weekend with a party( soonest we could get a venue we think he will love) where he will get to play with friends and family.

Aside from his birthday we are elated to report that Cristian is doing phenomenal since last visit. He is almost a completely different child compared to a month ago when we were in the intensive chemo treatments. He has a great attitude, his hair is growing back, he is eating and drinking, and generally getting along great with Leena. It is truly heart warming to see our child transitioning back to what a typical (now) 5 year old should be.

We are set to go back to the hospital on Feb 1 for another spinal tap. At this point the visits to the doctor will be monthly, most just to do a wellness check and flush the fluids in his port. We are giving him chemo (pill form) daily at home but he has been tolerating it well. While we would prefer no chemo at all, if this is what we can expect for the next 18 months, this is a walk in the park compared to what we went through.

As always we are eternally thankful for everyone who is supporting us and rooting for Cristian as we go through this journey. God continues to watch over us and answer all of our prayers. Please keep it coming, because it is working!

Since our last update we are happy to report that our family had a wonderful Christmas and New Years with everyone together! Leading up to us being discharged it was becoming very stressful that we might have to have a split Christmas, but I think that it only made it sweeter because we were able to appreciate the unity even more. Both of the kids were able to get way too many presents, and later we spent more family time building a gingerbread house!

Post Christmas we saw the arrival of family from out of town who had been anxiously waiting for the green light to come visit, including Mimi, Gpa, Aidan, and Nana. They made great time coming down from Colorado and stayed with us for almost an entire week. It was so good to see family that we hadn’t seen in a very long time, over a year for some of them. We were able to ring in the New Year surrounded but those who support us, including family from both sides. Cristian had a blast running around and playing with cousins that he had only met a few times. It was clear that we have a lot of “play time” to make up from this past year, something we plan to address with vigor in 2022.

Getting us to a spot where life goes back to normal means starting the last phase of treatment of Cristian’s Leukemia, called Maintenance. Today we Kicked things off with some blood work, everything came back great, and a spinal tap. Cristian didn’t really want to go back to the hospital and I don’t blame him, but he made the best of it and we got through things together!

For the maintenance phase things will work a little differently from what we have had in the past. Previously each phase lasted 2 months, maintenance will last for the next 18 months but will be quarterly cycles of the same treatments. We will start each 3 month cycle will include the following:

• Spinal Tap & chemo day 1
• Spinal Tap Day 30 (only the first 4 cycles)
• Steroids twice daily for the first 5 days
• Oral liquid chemo every Tuesday night
• Oral pill chemo every night
• Monthly clinic visits for bloodwork

All of this on top of the antibiotic that Cristian takes 4 times every weekend.

The net result is less chemo going into his body, but more of that chemo being given at home. While we would love to see no more chemo, this should be a vast improvement mentally for Cristian and the rest of us since we wont be going into the hospital every week.

This phase is where things finally get “back to normal” from a social interaction, mood, and physical state perspective. We are already seeing Cristian’s hair growing back and it should stay forever now, and we are also going to be able to do things a normal kid should be doing. Play time with friends, sports, eating out, and even school in the fall. We are finally reaching the light at the end of this tunnel. Yes we will have things to do that a normal child wouldn’t experience over the next 18 months, but for a majority of factors things will be normal. We have even started discussing a family vacation!

We are extremely thankful for the love and support everyone has provided us up to this point. We are eternally grateful to God for watching over Cristian and helping him conquer this illness. We will continue to provide updates on the blog here around how Cristian is doing as we stomp out this last step. We ask for prayers that God continues to watch over our family and guide us down the path he has laid out for us.

We are home! We have been blessed that Cristian has recovered enough that it is safe for him to come home and we can all be together in time for Christmas. This mornings blood tests showed continued improvement in his immune system kicking in and the doctors felt there was no need to keep us there longer. After 15 days, we are free!

On the way home from the hospital we stopped to pick up Leena from grandmas house and they were very happy to see each other. Leena let out a loud “hey, it’s booboo” as soon as she saw him. Once we arrived home they both ran off together to play. You could tell that they missed each other. You could also tell that Cristian missed all of his toys, because he spent the rest of the day playing in there.

We are set to go back next week for a quick test of his bloodwork to confirm he is continuing to recover. This trip will also tell us if we are able to see any family before 2022 without putting Cristian at risk of infection. We aren’t going to do anything that would result in another multi week stay at the hospital.

Thank God for all he is doing and we wish everyone a Merry Christmas!

Despite our hopes, today did not yield increased immune cell counts for Cristian. The counts did not drop, which is good, but we are looking for significant gains. It’s not uncommon for this medication to take a day or two to kick in and he did receive another dose today. Hopefully tomorrow we see things starting to work and moving is closer to getting home!

Keeping it short for today. Please join us in praying for healing and recovery for Cristian!