Things have been busy the past 2 weeks since our last update. Rest assured that the lack of updates is not for bad reasons, just a lot going on.

Following our last hospital stay to monitor Cristian’s kidney functions there were several tests ran to determine the extent of his injury. Normal lab blood work was performed and once again showed his Creatinine levels were high. The next step was a nearly all day test called GloFlo where they add a specific amount of chemicals into Cristian’s body and then draw blood at set intervals to determine the rate at which his kidneys are able to filter. This is the most accurate test available to determine kidney function. Luckily Cristian did great while the tests were going on and the GloFlo test came back showing kidney function was normal.

The day after the GloFlo test was performed, but before we received the results, we returned to the clinic so they could give him extra fluids as a precaution. During the visit we spoke with the doctors around other potential causes for his high creatinine levels. This ultimately led us to talk about Cristian’s diet where we discussed that he eats bacon, a lot of bacon, 3-4 packs of bacon a day. Not joking. Once the doctors heard this, and took into account how well his Creatinine levels drop after receiving fluids, they were fairly convinced that the source of his high levels were diet related and not the result of a kidney injury. The recommended course of action, cut back on the bacon lol.

With this new information we scaled Cristian’s bacon intake down to 1 pack per day and have seen immediate improvements in his creatinine levels. Who knew there is such a thing as too much bacon.

This takes us up to Tuesday where Cristian went in to receive treatment 2 of 4 for this phase. Remember that this phase has Cristian in the hospital for a 2-4 day stay each time to receive a high dose of chemo over 24 hours followed by additional drugs to get the chemo out. So we arrived at the hospital on Tuesday and they immediately began giving Cristian fluids to help hydrate and protect his kidneys from the incoming chemo. During the day Cristian did great and was all over the room playing.

That evening however Cristian did experience several nausea spells and had to use the doggy bag. This was no fun for him or for us to watch without being able to help much. The nurses were able to give several rounds of anti-nausea meds in increasing strength, until he finally got some relief and was able to sleep. The rest of the 24 hour dose saw numerous visits from the nurses and doctors to monitor Cristian. While we appreciate the attention, this does make sleep nearly impossible.

Following the 24 hour dose it was all about pumping fluids and watching the chemo levels drop in his blood. Once we got to day 2 the doctors began adding the additional drug to expedite the chemo leaving the body. This is a planned part of the process and helps prevent kidney injury and mouth sores.

This treatment Today we got to the point where it was safe for Cristian to go home. By the time we left Cristian was happy to go home but very tired. When we got home Cristian went to his room and spent the afternoon there with his toys.

We hope Cristian’s energy returns tomorrow and we can have a quality weekend together.

We appreciate your continued prayers for no more chemo and complete healing and restoration for Cristian. Thank you all!

Well after a 3 day and 2 night stay at the hospital we are now back at home all together. This stay was strictly a testing and observation stay, which made it pretty easy for Cristian (at least as easy as being in the hospital can be).

Following the tests and extra liquid, the doctors are confident that his kidneys are operating slightly below normal due to affects of chemo he received 10 days ago. That chemo is known to be harsh on the kidneys and the doctors work to get it out of the system ASAP after 40 hours. Most Children have expelled enough of the chemo after 52 hours for levels to be safe. Cristian took longer to reach that safe level, 68 hours, and required additional medicine to get there.

This extra time with chemo is his system appears to have caused an acute injury to his kidneys which his body is recovering from. The kidneys are very resilient and will recover, but it does mean we need to be cautious when restarting chemo to not cause a re-injury. Additionally this means that future doses of the high dose chemo (3 more planned doses) will have extra fluids given to Cristian early to avoid a repeat of this situation.

The doctors do have some additional data they would like to gather to fully quantify the severity of the injury. While we are not in a dangerous situation at the moment, we need to understand the functional levels of his kidneys so we can properly adjust future treatments. This means we will be collecting urine over the next day so they can test, and then do a specialist test in the future (schedule pending).

Once we got home Cristian wasted no time getting reacquainted with his toys and his favorite chill spot. Such a good feeling

Next step will have us back at the hospital on Tuesday to check his levels and determine if his body is strong enough for chemo. Based on the treatment schedule this should be another round of the 2-4 day chemo that we had 2 weeks ago. However based on his levels while at this hospital this weekend we do not think his body has recovered enough.

Thank you all for the support and love. Please keep the prayers up as we have a long ways to go still.

This was supposed to be our off week. Last week we were at the hospital for the high dose chemo and this week was supposed to be just 1 check up to make sure his body was recovering well. Things have not gone according to plan.

Tuesday of this week we came in for the quick blood draw and following a brief conversation with the nurse immediately after we went home. Quick, painless, back to our lives. Not so fast. About an hour later once the actual blood test results came in the doctors noticed that Cristian was a little dehydrated and his Creatinine levels were elevated. These 2 things could be connected but they weren’t sure and called us back to the hospital. Once back at the hospital they took a urine sample and gave some IV fluids. After 30 minutes of fluids they did another blood test to see if hydration improved both numbers. Good news, the IV fluids brought his hydration numbers into a better spot and his Creatinine levels dropped 30%. This lead the doctors to believe the issue was hydration related and told us to increase Cristian’s fluid intake by almost 50%, then come back on Friday to confirm.

The next 2 days were all about drinking water or juice. Cristian’s wants a cookie, drink water first. He wants to get in dada’s car and go for a ride, drink water first. He wants some water, drink water first (kidding). Thankfully Cristian was a champ and gave no fuss throughout.

As we returned on Friday for the follow up things started as a repeat from Tuesday. This time we made sure to wait at the hospital for the results before going home just in case they had some concerns. Well the results came back and the numbers were slightly worse than earlier in the week. This caused some concern for the doctors as to why his kidneys were not behaving normally.

So we are now back admitted to the hospital for a who knows how many night stay. The doctors have engaged the kidney specialists to begin looking over the bloodwork as well as the results from an ultrasound we did of the kidneys and bladder today. Given that it was Friday afternoon before this discovery was made there is a good chance that we won’t see much movement over the weekend. Luckily Cristian has a view he enjoys.

The doctors didn’t give much indication to potential causes but did say that this isn’t uncommon for kids Cristian’s age going through chemo. This could be something as simple as lowering the dosage of future chemo to match the pace of his kidneys, or something more. We won’t know until the kidney doctors weigh in.

Adding insult to injury, as Maria went to take Leena out for some mommy daughter time this evening, the family vehicle wouldn’t start. We have access to transportation via Maria’s mom if critical, but not the best time for car issues.

We thank everyone for the concern, support, and prayers. This is a tough road, but the love from you all is helping us get through. We ask that all keep praying for Cristian’s quick overall recovery and that this kidney issue is swiftly dispatched.

After 3 1/2 days in the hospital we have completed the first round of chemo in the new phase. This stay was nothing like our last visit, in length or difficulty. Cristian spent the majority of the time playing with his cars or sitting up watching construction vehicles as they work to expand the hospital.

Being in the hospital is never fun, but Cristian truly made the most of it!

We are now back home and all together again. Even though this stay was only 3 days it is rejuvenating to have our family unit back together again, right where we should be.

From here we will return to the hospital on Tuesday for a quick blood test and to confirm that his body is recovering from this round of treatments. After that will be another short stint in the hospital, hopefully shorter than this one.

One of our biggest fears during this phase is that Cristian will develop mouth sores. Thankfully God was there to protect Cristian and he has not shown any symptoms of having sores. Each time this medication is administered there is a new chance of issues.

We ask that everyone pray for continued protection over Cristian and quick healing to get us past this chapter.

After a good (but too short) break from being in the hospital, we are back. Unlike last week Cristian’s blood work came back showing that his body is strong enough to resume his chemo treatments and so we march on. These treatments mark the start of a new phase, Interim Maintenance, which will last for 2 months and include a 2-4 night stay every other week. Yes, that means we will be back at the hospital for overnight stays 4 times between now and August.

Since we left the hospital last Cristian has been doing wonderful! Each day his body got stronger and stronger which allowed him to be more like the little boy we miss so much. His appetite was pretty consistent, although he has continued to lose weight. But this hasn’t stopped him from giggling, laughing, and playing which has been so good to see.

As today’s treatments have commenced Cristian has stayed in high spirits. He has not been impacted by this round and is up playing around in the room with his cars. The hospital was nice enough to give him new toys today including a huge car quilt that he wasted no time in playing with!

Now we wait for the chemo treatment to complete (3pm tomorrow) and then they will begin administering “rescue” drugs to help get it out of his system. This type of chemo goes out in his urine, so they are giving lots of fluids as well as monitoring his urine to make sure the kidneys are not in distress. They will continue to give the “rescue” drugs and fluids until the chemo levels in his urine drops to a normal level.

While he is receiving this chemo he is at risk for developing mouth sores as a side affect. These can make it hard to eat or drink, and despite the name can form anywhere his saliva goes including out the back end. The “rescue” drug and fluids are also intended to help prevent this.

We ask that everyone pray that Cristian does not develop these sores at all during this phase of treatment and that each visit is as short as possible. We trust that God will protect Cristian, and prayers will help us along our path to recovery.

That’s right folks, you heard it here first! This morning Cristian was set to start the next phase of his treatments which included a planned 3-4 day hospital stay. We arrived at the hospital to check in this morning as planned and the doctors drew blood to confirm he was able to start treatments. These tests came back below the threshold for platelets which means we get another week to heal.

This is the miracle we have been praying for, to allow Cristian’s body to recover and stop putting the chemo in his body. We have no illusions that the chemo will help prevent the leukemia from returning, but this treatments hard on his little body and is as a family.

Over the past week Cristian has been wonderful! Playing, laughing, eating, all the things a little boy is supposed to do. It has been uplifting to have our family back together and we are looking forward to another week of this!

Please keep up the prayers for Cristian and our family. We are thankful for everything everyone has been doing to support us. Let’s pray in agreement for no more chemo treatments. Thank you all!!

(Hopefully you all got the Lynyrd Skynyrd reference)

After 24 days in the hospital and a series of challenges we are all finally home together!

Leading up to our discharge today Cristian has been doing great from a recovery standpoint. No fevers, no belly pain, increased appetite, and increased neutrophils! All of the things that the doctors said they were waiting to see became a reality today.

As the doctors came in to evaluate Cristian this morning and determine if it was safe to discharge, I was on FaceTime to get the update and ask any questions which may have arisen. As soon as they mentioned we were being discharged I hopped into the car to pick up mom and Cristian. I was in the car and on the road before the call ended!

Cristian and Leena had a nice reunion after what had to have seemed like a lifetime for these two. Leena initially walked past Cristian’s room where he was playing, but as soon as she noticed him she lit up and said “oh hi! What are you doing?”. Adorable does not describe the moment. It feels so wonderful to have our whole family under one roof!

Now we get to enjoy “normal” life until next week when we start the next phase of treatments, which unfortunately include a planned 3-4 day hospital stay. That means we have to spend as much time together and possible between now and then.

We thank everyone who has been supporting us and praying for Cristian’s recovery. We firmly believe that Cristian’s recovery was Gods will and would not have been possible without all the prayers and faith.

Don’t stop now however! The hospital stays and treatments in this next phase introduce new challenges which we haven’t faced before and we pray they will be easy for Cristian.

We have been waiting to see our old Cristian for the past couple weeks. With all the things his little body was dealing with, he hasn’t been himself and has felt very crummy. With the treatments he is getting prior to our hospital visit it is something you must prepare for, no immune system can lead to hospitalization. Compound that with all the things that have happened during our stay, I don’t blame him for not wanting to get out of bed.

Today, all of that changed! Cristian has had his best day in a couple weeks both from a medical standpoint and from an overall well-being perspective.

Medically Cristian’s immune system is showing signs of rapid recovery with a neutrophil count over 500. That is a bit of a magic number for the dr’s to feel confident that a patients body is able to fight off normal infections. Since we have crossed that threshold today they have cut way back on some of his meds and even stopped others entirely.

From an overall perspective we saw the same great results. Cristian was actually smiling several times during the day and joking. When we would sing or dance with the movie he would laugh, instead of his previous growl. He even spent a good amount of time out of bed so he could play with his toy!

So things seem to be heading in the right direction. We still have a few items to iron out but the doctors feel like they will all be addressed as his body continues to heal. These include:

• Continued low grade fevers
• Sporadic high blood pressure
• Belly pains

The belly pains are believed to be from not eating anything in 2 weeks and his stomach working to kickstart itself. Today Cristian had a little bit of apple juice, tomorrow we may try adding some solid items. We are being intentionally slow ramping him back up on foods because jumping back to a normal diet will wreck havoc on his digestive system.

Based on current progress we still have a few days here, at least. The plan is to continue to monitor his neutrophil counts and reduce his meds until he is off them all entirely. Before we can leave Cristian has to be eating some of the things he normally would and the fevers have to stop. Again the thinking is that his body will work these things out.

As always we thank everyone for their support and prayers. Please don’t stop now and ask God to get our son home ASAP!

The past few days have been a moving target, some things in a good direction and others in the wrong direction. Ultimately we are still here working to get Cristian feeling better, however long it takes.

As we covered in the last update Cristian’s fevers had stopped but he had developed pancreatitis. Unfortunately the fevers returned but are low grade. We are giving Tylenol to help keep him comfortable and to help his body fight off whatever is causing the high temp. The doctors have been testing his blood when his temp spikes to test for the source but so far all tests have come back with no sign of infection. There is a chance that this is a result of his body working to heal the pancreatitis.

Speaking of, his pancreatitis is getting better! His belly size has come down and is no long tender to the touch. More good news is that he has been off the pain meds (morphine) for 24 hours and has done fine. The doctors see all these as good signs I. His overall recovery.

With his improvements we are slowly starting to reintroduce food/drink. Since the pancreatitis diagnosis last week Cristian has been received nutrition via his IV to make sure his pancreas is not having to work to digest food. We are now ready to try some liquids today (other than sips of water) and see how he reacts. There is a chance that Cristian will be able to eat solids in the next day or 2, at which point they will stop the IV nutrition.

We have had a new issue arise in the past day, and that’s diarrhea (bowel movements) with bad cramping. Since about 3am this morning Cristian has had painful cramps followed by diarrhea about every 45 minutes. We have sent some samples off to check for a stomachs bug, and started on some anti-cramping meds. Hopefully we will get some quick relief on this because currently this is the only real discomfort he is experiencing.

As further overall signs of Cristian’s recovery we have some good news, we have neutrophils! For the 2nd day in a row Cristian’s blood has contained the cells that are part of the immune system which we measure to see if his body is able to protect itself from general infections and if it is safe to leave. We are still a few days from being above the threshold for discharge but this is wonderful news!

Yesterday we crossed the 3 week mark from this stay. By far our longest stay in the hospital. During that time Maria and I have been swapping almost every day between who is here via who is at home. Sadly we are getting quite efficient at this process. These 3 weeks have also had us move rooms twice, and required Cristian to have his port reaccessed two times.

Based on where we are today, we still a few more days before we go home. I feel like that has been the statement for this entire stay. But this time we are seeing good improvements in Cristian’s overall well-being that we had not seen yet. There are many good signs that point to this being the real “few more days”. Time will tell.

We ask that everyone who is supporting Cristian and our family to continue to pray for his quick recovery and our release. We cannot wait to have our whole family back together and we know God can make it happen.

The past couple days have been a little bit of a roller coaster for Cristian. Heading into the weekend things were improving. Fevers were lessening (gone now), attitude was improving, we felt like we could see the light at the end of the tunnel which was discharge. That’s when the belly pain started.

Up to this point the Dr’s have continued to draw blood to confirm that no new infections had developed. All clear, no signs of a viral infection after the first day we were here. Because Cristian has 0 neutrophils and therefor no ability to fight off anything they need to keep testing and providing IV antibiotics (and now anti fungal). During the tests they did notice that his red blood cells and his platelets were low. This resulted in a second blood transfusion since we were admitted, and a second round of platelets. These gave Cristian a little boost and it showed in him playing with his toys and talking more. But there was still belly pain.

Today as we discussed Cristian’s worsening state and his symptoms with the Dr, she laid out a few possibilities. Constipation, pancreatitis, or fungal grown in the gut. The Dr felt the likely cause was in that order as well. We discussed how Cristian had been “regular” but also that he hasn’t ate anything in about 7 days at this point. We decided to put a pin in that one and moved onto pancreatitis.

Testing for pancreatitis is done by looking for chemicals in the blood which suggest the pancreas is not working properly. As Cristian had a blood draw earlier that morning we were able to order a test on that sample and received the results fairly quickly. Confirmed, Cristian has pancreatitis.

This means that we have to stop Cristian from eating (he hasn’t wanted to) or drinking anything to let the pancreas recover. Any food or drink will stimulate the pancreas and cause more belly pain. To help Cristian through this new setback they are providing him extra fluids and IV nutrients. This will hopefully pass in a few days but could take longer.

With all that has happened we now have new requirements of what is needed for before we are able to leave.

• Neutrophil count increasing 2 days in a row
• Cristian has to eat something and keep it down

This is a much smaller list that we had a few days ago which is nice to see. We are still at least a few days from discharge, unfortunately.

All the while we are rotating daily who is at the hospital with Cristian and who is home with Leena. While it is difficult to see Cristian going through all of this, Leena helps recharge our batteries each day as she greets one of us at the door with a huge smile and a big hug. We cannot wait until our family is whole once again.

Thank you God and everyone for the support we have been receiving so far. This has been a mountain and we are still climbing. Please pray for a quick passage of this pancreatitis and discharge ASAP!