Today marked the beginning of our next phase in treatments to make sure Cristian never has leukemia again, Consolidation. Now that there are no detectable levels of leukemia in tests, the treatments will shift to rooting out any remaining cancer cells throughout his body. This is done by introducing new types of chemo and continued testing.

The consolidation phase is planned to last 8 weeks and will be made up of repeating 2-week cycles where different chemos are given. The first cycle will include home administered chemo given orally and also via injection. Each are once daily with the oral being for the full 2 weeks but the injection will only be 6 times. As part of the hospital training was to administer these shots at home, I got to do a practice injection on one of the nurses with celine. I did fine, but Maria who was watching from the back did “gasp” when the needle went in. It gave us all a good laugh because she wasn’t involved in the training at all, just a spectator.

When it gets to “showtime” and we have to do this at home, it will require both Maria and myself. We don’t expect this to be a fun experience for anyone involved. This also means that we are back to giving Cristian medicine every day, most days multiple doses. Luckily Cristian has been pretty easy to bribe with chocolates and Hot Wheels, both of which we are well stocked with.

On a positive note Cristian has continued to get closer to acting like his old self. His attitude is brightening, laughing and smiling is a normal occurrence, and his walking is getting more independent. These are all wonderful things and we thank God for answering our prayers in helping our son on this journey to recovery.

Cristian did have another spinal tap today along with some new chemo. There will be more spinal taps over the coming weeks, just to ensure that the levels of leukemia remain undetectable.

Today we also received information from the doctors around what the treatment plans are to the end. We will cover these in more details as we get to them, but below is a high level:

• Consolidation (April – May)
  • 2 week cycles
  • 4x spinal taps
  • High risk of infection
• Interim Maintenance (June – July)
  • 4 required admissions for high dose chemo (2-3 days each)
• Delayed Intensification (August – September)
  • 2 week cycles
  • High risk of infection
• Interim Maintenance II (October – November)
  • Chemo every 10 days
• Maintenance (December to End)
  • Chemo once monthly

This is obviously way more than anything we would like to see Cristian go through and we are praying daily for a miracle which will bring this all to a quick resolution for Cristian. We know this is all part of Gods plan, and we sincerely thank everyone for all the prayers and support we have received so far. We ask that all efforts continue to help Cristian get past this ASAP!

Today we received great news from Cristian’s doctors, his bone marrow test results came back and there are no detectable levels of leukemia in his system! This is the news we were hoping to hear as it is a critical milestone on our road to recovery. We aren’t done yet, so please don’t stop the prayers!

The goodness doesn’t stop there, as each day Cristian has been more energetic and active. The past week has seen him spending most of the day in the living room or at the dining table. He has also started smiling again, which points to his mood and spirit improving as well. Today Cristian asked for some foods which he used to eat daily but hadn’t been interested in since this all started. Each of these things are little steps, but as parents these are huge wins because all we want is to have our little boy back to his normal ways.

Our next step on this journey is the “consolidation” phase of treatment. We will go back to the hospital next week to begin this phase with new treatments. Here Cristian will get new cocktails of chemo and a few procedures to measure progress and ensure there is no relapse taking place in his system. This will continue for the next 7 months.

We are eternally grateful to everyone who has provided support to us so far and all of the prayers for Cristian. We could not have come this far without the love of family and friends. Please don’t stop now, as we still have a long way to go and hopefully God will bless us with a miracle of shortening Cristian’s overall treatment!

Believe it or not, it has been over a month since we started our journey as a family (which includes all of you reading this and supporting Cristian)! Our lives changed drastically the moment we received this diagnosis and we couldn’t have made it this far without the support from you all. Thank you does not describe the amount gratitude we have in our hearts to everyone!

Today does mark one large milestone for Cristian in his treatment plan, the end of twice daily steroids. These have been necessary to help his body cope with the affects of the chemo, but have also introduced their own side affects. Cristian has had random issues walking where his legs give out causing him to fall down. This has resulted in him not wanting to walk, and us holding him by under his arms whenever he does walk. But luckily we are past this now so hopefully his strength will return (and those cheeks go down) over the coming weeks.

Today also marked the planned end of the “remission” phase of Cristian’s treatment. Today he went in for a couple operations including a spinal tap as well as a bone biopsy. Next week we will get results on how many leukemia cells remain in his body. We are hopeful that the tests come back clear, meaning there are no detectable cells and the bone marrow is healthy as well (please pray!).

Based on the results we will be able to map out the remaining treatments for Cristian. The next phase is called “consolidation” and includes its own medicines. The goal of this phase is to get the cells which may be hiding throughout the body in places that were not tested. We will know this information next week when we meet with his oncologist.

Over the past week Cristian has been doing wonderful. We give this credit to God for granting Cristian strength and for working to remove the illness from his body. With the prayers from all of you, God is giving Cristian a lot of love. We pray that this continues and ask everyone here to keep up your prayers as well.

Look for more updates next week once we hear back from the doctors with the test results. Cristian won’t go back for more treatments until 3/30, so he will have a good stretch to regain more strength and keep playing with his toys.

This has been a tough process, and we knew it would be. The past 3.5 weeks have included a lot of learning, emotions, and medicine for our family. Medicine all for Cristian which his body has to process. With all of the medicine Cristian has had minimal energy to do much besides lay around watching his tablet. Little things like playing with his cars or even walking to the other room have seemed too much for his little body. We are told that this will not be the normal once we pass the induction phase of treatment which will hopefully conclude this Friday.

That being said the past few days have seen increased energy and interest levels for Cristian. He has been more talkative, smiling, and even asking to get French fries. I literally took him to get fresh French fries 3 time yesterday, anything for this little guy if it makes him feel better. Today we hit a new milestone, he played with his cars. For those who have spent time with Cristian you know that cars are one of his big 3 (followed by Dinosaurs and construction vehicles). Since coming home from the hospital initially he hasn’t played with them at all before today. It was wonderful to see Cristian having a bit of fun with something he enjoys so much even if only for a little bit.

As I mentioned above we are hopefully nearing the end of the first phase in his treatment, called induction. Once we are past this phase his medicines will change including stopping the steroids which are giving him the big cheeks. The next phase will present its own challenges, hair loss being the most noticeable. I’ve already started looking into how to shave my head so we can match!

On Friday Cristian had another spinal tap to analyze the fluid in his spine for leukemia cells. We received word today that his fluid came back clear, and that makes 3 in a row! We are so happy that the bad cells are getting out of his body. We are also happy that Cristian will only have to go in for chemo once a week, we know it was hard on him to go through that every 3-4 days.

This past weekend was better than the one before, Cristian had more energy and was more interactive. He did still spend most of the weekend laying down watching TV or his tablet but it was more relaxed and less “painful” looking. We attribute this improvement to increased bowel movements. We are giving him some anti-constipation medicine daily at this point to ensure we don’t get into a clogged situation.

Another recent development for Cristian is some chubby cheeks. These are a common side effect of the steroids and will go down once he is off. For the time being, look at them cheeks!

The rest of this week will be uneventful for Cristian until we go back on Friday. Thankfully this trip will be only for chemo and no operations. This should be less stressful or traumatic for him compared to what he has been through recently.

Again a big thank you to everyone who has been praying for Cristian and supporting us. Please don’t stop now!

Thank you to all who have been providing us support and prayers. Cristian has a long road ahead and will need all the support he can get. Maria and I have been praying a ton lately for a painless passage through this and quick healing.

Today a wonderful thing happened. While doing laundry, we opened our washing machine and saw this…

This blanket was given to Cristian by his aunt and today the lord chose to give us a message confirming our faith. We had been looking forward to wrapping Cristian in the word of God, this makes it even more special.

Cristian has remained low energy throughout this week, but his blood work is showing signs of progress. He has had 2 consecutive clear spinal taps, meaning there is no detectable levels of leukemia in his spinal fluid.

Tomorrow we go in for what we hope to be his last spinal tap until 3/19. If tomorrow’s results come back clear as well, then his chemo treatments will go down to once per week.

Again thank you all for the prayers and support. Please don’t stop now!

It’s been a few days since we have been home and yet things aren’t quite normal. Friday Cristian had another spinal tap and chemo in the morning, followed by a lot of resting. In the afternoon we got a visit from GPa which immediately lifted Cristian’s spirits and energy level. It’s always a good time when GPa is here.

The rest of the weekend has been rainy for us, and Cristian has been very limited in his activity. He spent most of the time in his room laying down watching TV or his tablet. At least he is somewhat comfortable. He has also asked repeatedly for mom to rub his belly.

We aren’t really sure on what is causing his lethargy, it could be this last round of chemo or perhaps the medicine that he take only on the weekends (antibiotics) in addition to the daily steroids that he is on. Whatever the cause, we don’t like seeing him this way.

Cristian still has another day to recover until we go back for another spinal tap and chemo on Tuesday. The sooner we can get to 3 clear spinal fluid tests in a row, the sooner that the chemo treatments will go down to once a week instead of the twice per week that we have currently.

Today was a good day, just what we were looking forward to. Cristian started his day with all of his toys and his normal breakfast of orange juice with bacon. In fact today he had extra bacon.

Overall his energy was good today, with a few breaks to rest in front of the TV. He spent a lot of play time with Mimi doing whatever he wanted to do. Today was a good day.

As for us, today we were both back to work (from home). Maria had a good day with several breaks to come out and give hugs and kisses to the kids. I was a bit fatigued following the stress from the past week. There was so much go go go and I had to steer the ship, now that we are home it is catching up with me. I expect it will take a couple days to recover fully.

Tomorrow we will be going back to the hospital for a spinal tap (with fluid test) and more chemo. This has us a little stressed because we know he won’t like any of it. The prep before we leave, no food or drink to make sure we don’t cause problems while under anesthesia, going back to the hospital so soon, etc. This is unfortunately another part of the “new normal” which we will all have to adjust to.

As I posted earlier today we are finally home! The doctors gave us the all clear around noon and we were out shortly after that. It feels so great to have Cristian at home and you could tell he missed being home. As soon as we got home he checked all of his toys and even played with his little sister.

Earlier this morning they took Cristian off of fluids, which was the last step before we could be released. Following this they took blood around noon to confirm that his body was managing the Uric Acid effectively. His levels were slightly elevated from the previous blood draw but the doctors believe his body will do fine as long as we keep him on a lot of liquid intake. They will be checking his levels when we go in for chemo on Friday as well.

Later that morning we received training around home life changes to keep Cristian healthy. We already knew some of these, but it was a good list to review.

• Fever over 100.4, we need to call
• Stops eating or drinking for more than 1 day, we need to call
• Not taking meds, need to call
• No potted plants in the house as they contain a fungus that can harm him
• Frequent hand washing
• No food or drink sharing

We were also able to get a lot of great information from the dietician around how we can give Cristian’s body the best chance to handle the chemo and beat this outright!

• His current diet is fairly well rounded, except missing dairy
• Add 600 units of vitamin d daily
• Add 50 milligrams Vitamin C daily
• Add 800 milligrams Calcium daily
• No folate or iron
• Continue grazing habit for eating, large meals may contribute to nausea
• Don’t force foods or meals if he is not hungry, can create a long term negative association with that specific food
• No concern if he skips meals or a day without eating
• Fluids are critical for his body, should not go a full day without drinking

Prior to being discharged with spoke with the doctor about the spinal tap from yesterday. We do still see a few leukemia cells in the spinal fluid. Not concerning at this point or anything that would increase his risk level. This does mean that Cristian will need at least 3 more spinal taps, 2 more than the standard treatment amount.

By the early evening Cristian was starting to lose steam. With all of the things he has been through in the past week we were not surprised. He was looking forward to sleeping in his own bed and there was no pushback when bedtime finally came.

We are extremely fortunate to have so many people who care about Cristian and our family. Thank you to everyone who reached out to us, left comments here, or prayed for us over the past week. We know that we aren’t alone in this, and that means a lot. Thank you all!

It is 8:35pm as I’m writing this, and now that it’s done I’m going to pass out.

We just got discharged and are heading home! Full post coming tonight, but couldn’t wait to share the good news!!

A huge thank you to everyone who has been praying and supporting us! We know that we aren’t done yet, but getting back home is a big milestone.