Christian Moreno Updates

7/25/08

Our apologies for the delay in getting you an update. It's been a couple of hectic days. Anyway, during our last report we talked about Christian making it out of surgery, which was a huge stress relief. On Wednesday at about 5:00 Christian was taken off of the ventilator, which was a big milestone. Also on Wednesday, Christian's new liver began showing signs of functioning. He was also weaned from the sedative at about 11 am and a narcotic in the epidural at about 2 pm due to his level of sedation. Christian was way out of it until about 5 am yesterday, which was not that surprising due to the liver not being able to process the potency of the pain management medications as quickly. He has been more alert since yesterday but he is quite cranky, which we are grateful for because that attitude will get him healthier quicker. This morning he has been awake since about 1 am watching cartoons. We are expected to move out of the ICU today to the sixth floor. The buzz on the ICU floor from the doctors over the past 48 hours is how well Christian is responding. The doctors are pleased with how well the liver is functioning and his numbers continue to make positive improvements. His epidural, for numbing his mid section, fell out over night. This was a little bit of a concern because his blood clotting numbers are higher than they would like and it it more difficult to stop the bleeding in the back where the epidural is placed, which can put unnecessary stress on the spinal cord. Needless to say, it is being closely monitored. The upside is that Christian is managing his own pain with some oral suppressant pain medication.

That's all for now. We'll let you know when he gets out of the ICU.

Abel.

P.S. The attached picture is from this morning.

Picture from this morning

July 26, 2008 - We are out of ICU. We are now in room 627.

6/19/08 Update

6/13/08

As a result of being in a holding pattern for a couple of weeks, we were able to get out of town from June 5-9 as a family and go to Marcus' hockey tournament in Winnipeg, Manitoba. This opportunity became a reality thanks to the kindness of Dave Berlin and Joe Sakic. They chartered an airplane to Winnipeg and invited our family to fly as well. It was an absolutely awesome weekend for all of us and especially Christian who had the "best day of his life." Marcus' team did not fair as well as we would have hoped, but it was a great weekend nonetheless.

Christian officially was listed on the United Network for Organ Sharing (UNOS) liver transplant list on June 12 (www.unos.org). Unfortunately, we learned that he was only listed as a -10 on the Pediatric End Liver Disease (PELD) network rating system. We did not realize that a patient could receive a score lower than 0 so you could imagine our surprise to learn this information. Based on this listing, Christian's medical team is appealing the decision to the UNOS organization to get him a higher PELD score. We expect to know within the week whether or not the appeal was successful. His score was low because of his current need for a liver and the fact that the tumor is larger than they would it to be for a patient in his condition. Not at all good news for us, but we are adequately dealing with the news.

One of the reasons for the delay on being placed on the liver transplant list was because the financial package for the liver transplant needed to be approved by Kaiser Permanente, our insurance provider, and a heart catheterization procedure that his cardiologist wanted to be conducted to ensure that he could sustain the liver transplant surgery. The surgery took place on June 12. Things went fine. They looked at both sides of his heart and did a balloon procedure on his aorta since it was slightly narrow (it was 6mm and they ballooned it to 8mm).

The reason they needed to do the catheterization surgery was because of a moderately leaking right tricuspid valve that could present some problems during the transplant surgery. They were concerned that the transplant surgery would increase the pressure to his heart unnecessarily and cause additional harm. The results indicated a higher than hoped for pressure, but is presumed within the limits of being able to perform a transplant surgery. The result of the surgery indicated that Christian's right side of the heart was 10 millimeters mercury higher than is normal, but is well within the comfort level of his medical team so we are proceeding with the liver transplant.

Abel also volunteered to become a living liver donor for Christian if it comes to that, but we were informed that they wanted Christian to be on the donor list for three weeks before getting to that point. It was asked why not go through the testing now and have the situation in hand if it comes to Abel donating a portion of his liver. The liver transplant coordinator responded that they preferred him to be on the list to see what type of calls they get and the testing for a living donor that may not be used is somewhat costly. She did indicate also that cost was not the driving factor, but what wanted to see what occurred through the list first.

We were informed that there are three options for a transplant (in order of priority): 1) a full child liver that is of similar size and age, 2) a cadaver transplant partial liver from a brain dead patient, and 3) a living liver donor that has a compatible blood type.

6/13/08 Update

5/26/08

In the last update, we failed to thank the students and staff of Westview Elementary, Marcus' and Christian's school, for the generous fundraising that they organized on our behalf. They raised over $2,700 in a penny collection and the selling of "Powerplay for Christian" bracelets.

Most of you know by now that Christian's liver tumor removal surgery did not go as hoped. The doctors opened Christian up and discovered that his liver was in fairly bad condition meaning that it was lumpy rather than smooth and it was difficult to disseminate good from bad tumor cells. Therefore, Christian's surgeon closed him up and came out to inform Stacy and Abel that the surgery was unsuccessful and at, which time, the surgeon began discussing a liver transplant. The thought of a liver transplant caused our hearts to drop to the floor, but it the best alternative that we are currently faced with so we are eager to embrace the opportunities that it presents.

A liver transplant is a complicated process because it first has to be determined if the candidate is a "deserving candidate." A deserving candidate means that the candidate is not metastatic with cancer elsewhere in his/her body where the transplant would not serve a valuable purpose. The process for determining whether Christian is a viable candidate is undergoing with additional blood work to determine if there are other health concerns that would prevent the transplant surgery from going well.

At the same time as the surgery mentioned above, the surgeon took some tissue samples from Christian's lymph nodes to determine if the cancer had spread to other parts of the body since this is a good indicator if there is cancer elsewhere. The good news received is that the lymph nodes are free of cancer cells.

Christian was discharged from the hospital after his surgery on Monday, May 19. However, Christian was re-admitted on Thursday, May 22 for another round of chemo therapy. Dr. Greffe decided to change his chemo therapy treatment from a 3 day cycle to a 4 day cycle starting on Thursdays. The reason for the change was because Dr. Greffe was concerned about Christian's hearing loss in his good hearing left ear, which is a side effect of the chemo. The new treatment cycle includes a four hour treatment on Thursday with a bladder and heart protection medicine over night and a four hour treatment on Friday with a bladder and heart protection medicine overnight and hour treatment on Saturday with a bladder and heart protection medicine over night with discharge occurring on Sunday. As a result, Christian was discharged from the hospital on Sunday, May 25.

We also received word on hursday, May 22 that Christian's lymph node biopsy was negative and therefore was eligible to be placed on the liver transplant list.

5/26/08 Update

5/13/08 Update

4/11/08

It has been some time since we last reported on Christian's current health situation. We are hopeful that we will be more diligent in writing updates for the website in a more timely manner.

Ryan and Shawna Sablich, owners of Rainbow Play Systems, donated a playground set to Christian so that he can enjoy the outdoors in the comfort of his own home. We are grateful for their generosity to Christian and our family.

Jackson's Sports Bar and Grill, located at the Ice Centre at the Promenade in Westminster, hosted a spaghetti dinner fundraiser for Christian on March 28. The fundraiser was an overwhelming success. We would like to thank Valente's Deli for donating the spaghetti products, Hyland Hills Parks and Recreation District for the basket and support during this time, the 207-2008 Hyland Hills Bantam AA hockey team, and all of the organizations that donated goods for the raffle that was held. We would also like to thank Wendie Folla (formerly Muniz) and the rest of the Jackson's staff for their tireless efforts leading up to and during the fundraiser. We are in absolute amazement by the generosity of people because this fundraiser raised nearly $9,000.

Unfortunately, on Thursday, March 27, Christian developed a fever and was taken to the hospital for a check up and medication to treat the fever. Fortunately, he was able to come home the same day and rest for the Jackson's fundraiser that was scheduled for the next day. On Friday, March 28, Christian still felt quite lousy and fatigued so although he was able to attend the fundraiser he and his mom were unable to stay for very long. Some of the time was talking on the phone to the doctors at the hospital to determine whether or not he needed to come back to the hospital on Friday night, but we were lucky in that they informed us to take him home and give him ibuprofen for the night and monitor his condition.

On Thursday, April 3, Christian developed another fever so Stacy took him to the emergency room of Children's Hospital at about 4:00 pm. At about 8:00 pm, Children's doctors determined that Christian would be admitted to the hospital until he could break his fever. Since this was our first time going through this as a family we weren't sure what to expect so we made some wrong assumptions about what would occur next. We assumed at the time that Christian was being admitted overnight since he was scheduled to have a CT Scan (we'll talk more about this below), doctor's appointment, and Vincristine treatment on Friday morning.

At about 1:00 pm Friday afternoon, we decided to get a little uppity with the doctors at the hospital since we had not heard what the next steps were going to be for his Friday treatments and discharge from the hospital. We were informed that Christian would not be discharged from the hospital until he was fever-free for a minimum of 24 hours, which meant we weren't coming home on Friday. Christian did not become fever-free until about Monday, April 7. However, his white blood counts were rather low so even if he was fever-free he wasn't coming home. The long of it is that Christian and Stacy got home on Wednesday, April 9 at about 6:00 pm. One additional thing to mention on this is that Christian had a condition called "Neutropenia" which is a is a condition of an abnormally low number of a type of a particular type of white blood cell called a neutrophil that caused him to be susceptible to infection. However, the blood cultures that were taken all came back negative so we were unsure why he developed a fever.

As we previously mentioned, Christian had a CT Scan on Friday, April 4 to determine whether the chemotherapy treatments were having a positive effect on the tumor in his liver. Much to the doctor's surprise, and after only two treatments, the tumor has been reduced significantly. If you will recall from an earlier update, Christian's tumor on February 14 took up about 75-80% of his liver. On Friday, April 4, we received word that it is down to about 8%. This was a real uplift moment for us and was encouraging to hear.

Christian's oncologist, Dr. Greffe, also discussed surgery with Christian's surgeon, Dr. Moulton, this week to determine an action for removing the tumor in its entirety. The decision was made to proceed with Christian's third chemotherapy treatment cycle that was delayed by one week to next week, April 16-19, wait the normal three weeks and schedule a surgery date. We currently estimate this to be around the week of May 19.

We continue to thank you for your prayers, support, and friendship during this time. We are only about a ¼ of the way through the marathon, but with your prayers and support it has been easier to endure these trying times.

4/11/08 Update

4/8/08 Update

3/25/08

It has been some time since we last reported on Christian’s current health situation. Since our last update, Stacy celebrated a birthday on Saturday, March 22.

On March 11, 2008, the Rocky Mountain Rage, a Central Hockey League team, hosted a fundraiser event at its game against the Loveland based Colorado Eagles. Christian was able to attend and enjoy the game in a secluded part of the building. Christian and company was able to watch the Rage win the game in a shootout, which is one of Christian’s favorite parts of the game. We cannot say enough about the Rage and their interest and involvement in Christian’s health especially Chip Dunleavy, Nathan Rosychuk, Clay Plume, Brent Cullaton, Jennifer Reifman, Brian Clark, and Erin Pahl.

As we previously mentioned, Christian is expected to receive his chemotherapy treatment cycle every three weeks. However, due to a lower than expected blood count, the doctors cancelled his treatment that was scheduled for March 12 through March 14. On Tuesday, March 18, he went in for some additional lab work to confirm that his blood count was high enough for him to receive his next treatment. The lab results indicated that his blood count was up to an acceptable level and therefore he was scheduled for his 2nd cycle of treatment beginning on March 19 through March 21.

On March 21, we received a call from a woman whose children attend Tarver Elementary in Thornton, located at about 136th Avenue and Cottonwood Lane, that the students of the elementary had a Christian Moreno fundraising competition amongst each grade. The call was to inform us that they wanted to present the donation to us since the following week was Spring Break vacation for the school. Therefore, on their way home from the hospital, Stacy and Christian met up with Abel at Tarver Elementary to be presented with the funds that were raised on Christian’s behalf. Much to our surprise, the school staff presented us with over $2,600 in donations that the students raised for Christian. Our understanding is that the third grade class won the competition. We cannot say enough about the students and staff at Tarver Elementary that extended themselves to a kid they do not even know. Absolutely amazing and awesome.

Since Christian has been home from his last treatment, things appear to be going as expected. He has not experienced the same symptoms and pain that he experienced after the first round of treatment so we are cautiously optimistic that he will continue to maintain his health through this marathon ordeal.

That’s all for now…

3/25/08 Update

3/8/08

Thanks to Brad Davidson we now have a web site that we can more easily share health updates and other information to those that are interested. Also, we failed to mention during our last update the official liver cancer diagnosis that we received. On February 21, Christian’s Oncologist Dr. Greffe confirmed that Christian has Hepatocellular Carcinoma. Not at all what we wanted to hear since hepatocellular carcinoma is a more aggressive cancer that has a higher likelihood of returning. Upon resection of the tumor sometime in May and the additional chemo treatments, Christian will be monitored closely for the next five years or so to confirm that the cancer has not returned.

Since our last update on 3/3, we attended the Colorado Avalanche versus Anaheim Ducks on Thursday, March 6. First of all, we have to say what an awesome time we had all day. Thanks to Paul and Karen O’Brien and Floyd’s Barbershop (www.floydsbarbershop.com), we had a limousine ride to and from the game. It wasn’t just any limousine, it was a Hummer limousine, which our kids absolutely loved. Even heading into Thursday morning, we were not certain that we were going to attend the game since we had not yet received confirmation that a suite had been donated to our cause. Thanks to Tammy’s relentless work and her communication via e-mail she was able to secure a partial suite shared with Waste Management and a full suite of our own for us on Thursday morning. Due to us being offered the full suite, we respectfully declined Waste Management’s generous offer.

We arrived at the Pepsi Center at 5:00 to meet with one of the Avalanche doctor’s, Yoni Zinis, so that he could escort us to a private meeting with Teemu Selanne of the Anaheim Ducks. At that time, we also met up with Steve Hoem, Media and Communications Manager of the Anaheim Ducks, who personally introduced us to Teemu Selanne. We have to tell you that Teemu Selanne is an extraordinary individual who was personable and compassionate for our situation. We were able to spend about 40 minutes with Teemu to talk, take photos, and receive autographs. Teemu also secured a number of autographs from his teammates on our behalf. We also received autographs from Ryan Getzlaf, Chris Pronger, Scott Neidermayer, and Jean Sebastian Giguere some of Christian’s other favorite Ducks players.

At 6:15 Jason Schofield of the Colorado Avalanche escorted Christian, Anthony, Marcus, Alec, Gunner, Colton, Dylan, Trenton, Austin, Abel, Jim, and Brian to the Avalanche’s bench in order to watch the pre-game warm-up. Meanwhile, Stacy was preparing herself for a zamboni ride that occurred after the pre-game warm-up was over.

As we were walking off of the ice, a Channel 4 cameraman named Mark caught up with us so that they could do a story on Christian. Channel 4 spent about 2/3 of the game with us interviewing Stacy and Tammy and observing Christian watching the game. We now have a glimpse of all the glitz and glamour that movie stars face with the paparazzi, but in a good way. Mark was nothing short of professional and respectful during his time in the suite with us.

Although the Anaheim Ducks lost 1-0 to the Avalanche, it appeared that Christian had an amazing time at the game. He even cheered for the Avs when the goal occurred. After the game, Anthony, Marcus and Abel skated on the Pepsi Center ice, which was part of the ticket package if you bought tickets supporting Christian. It was a fun time, but Christian had all that he could handle at about 11:00 pm so we headed home.

What some of you are aware of is that Christian has had abdominal pain for about a week and a half now due to not experiencing a bowel movement. On Friday, March 7, Stacy took him back to the doctor for his weekly treatment and lab work and to have the doctors take another look at his stomach. According to Stacy, the doctors indicated that they were bringing out the big guns and prescribed a fluid medication that should make him have a bowel movement within 24 hours. Due to his stomach ailment, Christian did not receive his weekly Vincristine treatment since one of the side effects is constipation. Stacy and Christian are now scheduled for another appointment on Tuesday, March 11 for additional lab work and to determine whether or not Christian will be admitted to the hospital for his next inpatient chemotherapy treatment that is scheduled to occur on Wednesday, March 12 through March 14. Christian’s white blood count is about as low as it can go so he is extremely susceptible to illness if he gets infected with something. The good news is that it appears as though the chemo treatments are effectively killing the cancer causing cells since his alpha-fetoprotein has dropped significantly to 23379 from the original biopsy that was over 33000. Normal is in the 15000 range.

3/8/08 Update

3/3/08

It has been sometime since we last communicated the latest information on Christian’s health and for that we apologize. Before we get started, we would like to wish Anthony a happy 15th birthday today. Unfortunately, his special day is clouded with the health of his youngest brother.

I would also like to thank you all for the offers of photographers that we received after our last update on 2/19. What we did not know at the time is The Children’s Hospital has a non-profit organization called Flashes of Hope (www.flashesofhope.org) that volunteers monthly to take photographs of patients with cancer and other life threatening conditions. Ironically, the Flashes of Hope group was at the hospital on 2/21 and we were able to get our family portrait done at that time.

A lot has happened since our last update. Members of the Rocky Mountain Rage professional hockey team including Clay Plume, Chip Dunleavy, and Nathan Rosychuk visited Christian on Tuesday, February 19, which uplifted his spirits. I believe Christian was probably the first to receive a Clay Plume autographed bobble head doll, which were given out at the home game on Sunday, February 24. On Wednesday, February 20, the Colorado Outlaws Junior A hockey team visited Christian with an autographed team jersey. Christian is a huge Colorado Outlaws hockey fan so he was excited to spend some time with the team upon their return from a road trip especially his favorite player and friend Joe Carroll. At this encounter, the Junior A Outlaws offered to shave their head for Christian, which occurred as a fundraiser on Wednesday, February 27. On Thursday, Cody McCormick of the Colorado Avalanche visited Christian to uplift his spirits. Cody brought with him an autographed Avalanche jersey amongst other notable items. Cody even got to participate in our family portrait, so timing is everything. We were fortunate to receive a visit from Cody McCormick considering the Avalanche was on a 5 game road trip. Unfortunately (but fortunate for us), Cody is injured and was not on the trip at the time.

Christian was discharged from the hospital on Friday, February 22 after completing his first chemotherapy treatment cycle, which appeared to go well. His chemotherapy treatment cycle includes three different medicines in a three day period with one starting on Wednesday and two on Friday. Thursday was a nauseous and vomiting day, which is one of the side effects, but he appeared to battle through it ok.
On Sunday, February 24, we were able to get Christian out to watch the Rocky Mountain Rage play the Colorado Eagles at the Broomfield Event Center. Thanks to Abel’s role in the organization and to the Rage organization, we were able to get VIP parking, enter through the back part of the building and remain isolated from the rest of the crowd. By the way, the Rage won the game 7-1.

On Tuesday, February 26, we had a scare and had to get Christian back to the hospital due to a sleepless and painful Monday night/Tuesday morning where he was complaining of abdominal and back pain. As you can appreciate, we are out of our element and on pins and needles when it comes to his current health since we know his white blood count is dropping daily. And because of that we are not taking any risks so Stacy and I took him to the hospital to get looked at. They took an x-ray of the liver area (which showed an enlarged liver) and took his complete blood count (cbc), which revealed everything was ok, but he may have been dehydrated so they sent us home to hydrate the little feller.

On Thursday, February 28, Christian probably received his best gift of all when Stacy opened the door to our house and discovered a package on the front porch. It was an autographed Anaheim Ducks jersey signed by Teemu Selanne. A member of the Hyland Hills Hockey Association, Boyd Sutton works for Easton and was in California earlier in the week and was able to get Teemu to sign this jersey. It was probably the biggest smile and most joy we have seen from our son and brother since this problem was discovered.

On Friday, February 29, we took him in for his regularly scheduled appointment and cbc, so we thought. What was revealed to Stacy and I is that he also receives a weekly treatment of Vincristine, which is one of the medications that he takes during his chemotherapy treatment cycle. The doctor may have told us of this plan and we missed it so needless to say we were a little stunned to learn he was getting a treatment.

In closing for this update, we cannot say enough about all of the support, prayers and gifts that we have received since receiving this diagnosis. The Colorado Hockey Community has been absolutely awesome. We have received cards, funds and offers of help from a number of hockey associations including Arapahoe, Colorado Hockey Club, Littleton, Boulder, Pueblo, Arvada and of course Hyland Hills. We are touched and grateful for the overwhelming generosity of so many people and for that we say THANK YOU.

3/3/08 Update

2/19/08 Update

2/16/08

As you can appreciate the last couple of days have been emotionally trying for our family. We certainly didn't expect to be in another one of these life threatening situations with Christian. On Thursday of this week, Stacy took Christian to the doctor due to what we believed was an injury that resulted from horseplay with Marcus. Christian's pediatrician didn't feel comfortable with what was happening so he immediately directed us to a specialist and to get a CT scan on the area. At the specialist’s office, they believed he had internal bleeding so they immediately transported him to The Children's Hospital via ambulance due to the risks associated with these types of injuries. Once at Children's, we were given another CT scan, but this time with contrast. Stacy initially took Christian to the doctor at about noon. At about 6:00 pm, we learned that he had a sizable tumor in his liver. Not at all what we expected to hear. We are grateful that we had this reason to take him to the doctor otherwise we would not have known about this latest health concern. After learning about the tumor, the wheels were set in motion for surgery to remove some tissue for testing. Surgery was scheduled for Friday morning at 9:00, which by all accounts was deemed successful. At about 7:00 last night, we finally met with an Oncologist to discuss next steps and treatment. The doctors are not ready to discuss options at this point due to not officially having a diagnosis. However, it is cancer and we are expecting to begin chemotherapy treatments starting this week. We will probably not know the treatment regimen until Monday once the doctors determine the type of cancer that Christian has. The oncologist informed us that the tumor is about 14 cm big taking up about 75-80% of his liver. The doctors believe that the cancer is still only in the liver, but they will probably do a bone scan to ensure it isn't in the bones. The next 48-72 hours is when we expect to learn more and what the next steps may be. We anticipate that Christian will not be discharged until the end of next week at the soonest.

We continue to appreciate the love and support everybody has shown us. We know we will not get through this alone and we will continue to need you. There have been many offers of help, but we don't really know what we need at this time. Some help could come in the form of keeping a 7 year old and 14 year old entertained in a hospital setting. We will definitely be taking you up on the offers once we get a better handle on the situation and get some of our questions answered.

By the way, I didn't have everybody's e-mail address in my contacts list so if some of you could forward on to those that didn't get this transmission I would greatly appreciate it. Also, if we did not personally call you to tell you of this current situation, please do not take it personally as we adore you all very much, but we're an emotional wreck right now and it's difficult to talk about. For those of you that may want to stop by and see Christian you are always welcome. Do not feel like it will be a burden on us because it won't.

2/16/08 Update

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