Monday, December 31, 2007

Hello there. We had a pretty good night. Elijah was only up a couple of times, but we were all able to get some good solid sleep in. His WBC is down to 1K, which only means one thing NO immune system. Mamma is paranoid!!! The oncology nurse came to talk with us again today and tried to remind us that yes we have to be careful, but he also has to have a normal life. She also reminded us that his own body is his worst enemy as far as bacterial infections are concerned and that it's inevitable that he will get some viral infections like a cold, but as long as he doesn't have a fever we should be pretty safe. They seem to stress the fever thing a lot and she even said that they try to scare parents with that because besides the disease itself, a fever that isn't treated soon enough could be fatal. They transfused some platelets this am because they were going to remove his central line and extubate him. His platelets at 04:00 were 21. Normal for platelets is 150-250. This is what can cause him to bleed and bruise very easily. he has some bruising on his arm just from taking tape off. They removed his central line with him still intubated so that he wouldn't fight and cause it to bleed even more. They had to hold pressure on it for ten minutes and they thought this would be easier if he wasn't awake. The best news today are a couple of things. One, he is now extubated and doing well with it. They did put him on what they call heli-ox. It is helium and oxygen mixed together. The reason behind this is when the two are mixed together if forms a less dense air. Oxygen alone is dense and they explained it by saying the less dense it is the smoother the air flows so that if there is any swelling of the vocal cords or pressure on his trachea, the air will flow through easier. It's easier to understand with hand movements, and from the doctors who know what they are talking about. The second piece of good news is that all of the doctors (pediatric intensivsit and oncology) and nurses seem to be very pleased with all of his labs and numbers. The oncology nurse even said to us that they couldn't ask for any better at this point. There are several of his labs and numbers that are still in a critical range, but they expect that right now. Elijah is still on some sedation medication that they will slowly wean off over the next couple of days. The staff doctor says that we can plan on staying in the PICU for the next 3-4 days, just to make sure he is stable and his airway is okay. They are also going to give him a drug they call methadone which is used for withdrawal. He was on a narcotic for 7 days so he will have to go through withdrawal but this medication should help with that. We are still waiting for poop!! I never thought I would be praying for my three year old to poop, but he really needs to. We had some friends from my work visit today (Amanda, Wendy and Audra). It was nice to see some new familiar faces, thanks for the bag of goodies that was very sweet of you. Thanks to all of you who are willing to help out when we get back. I got a comment from Teresa Giles about the sign-up at church. We can't even begin to say how much we appreciate every one's willingness to serve and help out. It's absolutely incredible and I don't know what we would do without our support system. Thank-you, Thank-you, Thank-you. It really does mean the world to us. Hope I have more good news to report later. Bye for now!!

Sunday, December 30, 2007

I was going to update earlier today, but this network is so bad. I've tried numerous times to login and until now couldn't get anywhere. It has been kind of a hard day because the doctors decided to switch the sedation that Elijah is on, and apparently he is completely immune to that medication. This means he would wake up fairly often and open his eyes looking at us with a great amount of fear. As you can imagine, this has proved hard on us. We would rather not see him intubated at all, but if he has to be, then we would like him to sleep through it. While it is exciting to see him open his eyes, eyes filled with fear are not fun to look into. Well, on to the good news. This morning we looked at the x-rays with the doctors and the mass in his chest is quite a bit smaller. He also had a ct scan to see if the mass is pushing on his trachea (which would delay extubation) and it is not! So we are well on the road to having him breathe on his own. They tell us that tomorrow, they will have a look at his trachea in the OR so that they can make sure that they won't have any problems with the extubation. His white cell count is down to 1.4 which is good, but that also means that his immune system is basically nil. Remember, we would love to see you, just remember that if you come you will have to be anal about washing hands and keeping clean. The labs that they draw for his kidney function have come down, which is excellent because if they would keep going up, then he would need dialysis (which we really don't want). So that is really good news because it means that his kidneys are keeping up the task of flushing all of those dying cells out of his system. They also did a renal ultrasound which gave us results that are completely useless. They told us that the size and shape of the kidneys is normal, as well as having no blockage, but the color of the kidneys is abnormal but they don't know what that means until the pediatric radiologist can tell us (tomorrow). He also had an ultrasound on his belly, and there is fluid there that hopefully when he is up and moving, he will expel on his own. He still hasn't pooped yet and we need him to do that, so this is the first time that we are praying for a dirty diaper :). Also, his spleen and liver are still enlarged, but they say that they are still functioning correctly and look normal except for the size. Hopefully they will reduce in size also as they don't have to work so hard. Another thing that we heard from our oncologist today was that Elijahs count was NOT the highest that he has ever seen, which reassured us. He said he had a child that had a 1.6 MILLION count of cells, so it's good to know that he wasn't the worst case that this oncologist has seen. We are not looking forward to Elijah waking up all night so we will get going and update you guys later. Thanks again to all of our family and friends for the prayers and help that we have received. We are so grateful for the comments that you leave as well, it boost our spirits. We love you all.
We ha a much better night. Elijah slept better, and therefore so did I. Levi has been sleeping okay even when Elijah and I haven't. HaHa! This isn't any different from home. There isn't a lot to report yet this am, he will get his morning x-ray and then maybe we will know more when they do rounds. His belly started getting really big, so they did an x-ray over night and think that a lot of it is just air. They moved his NG tube a little to see if it would help get some of the air out of his belly. He is still peeing A LOT, but no poop yet and we need him to do that. An x-ray of his belly showed that he didn't have a lot sitting in his bowel, but they would still like to see something. they have given him medication twice to help and so they expect it to happen anytime. On that note, I'll try to update later this morning.

Saturday, December 29, 2007

Elijah is finally resting better. They worked all morning to get his sedation medication to the level that would work best for him. We just got his 16:00 lab work back and his WBC is 3.8K. It keeps going down and that's what we want, things are working. The biggest thing that they are waiting for to be able to extubate him is for the mass in his chest to shrink. The staff dr that is on all this weekend and next week said that if they don't see much improvement by Monday or Tuesday, he will order another CT scan which will show a much closer 3D look at where it is in comparison to his trachea. If it's not affecting his trachea or they see improvement on the x-ray, they can make the decision to extubate him sooner. They are hoping that with the chemo it will start shrinking on it's own. His latest blood work also showed that his platelets have dropped again too, so they will see where they go tonight and decide tomorrow if they will give him a transfusion. Melanie, Zach, Meredith, Jason and Teresa visited today and we enjoyed seeing them and laughing a little. Meredith talked to Elijah a little and he had stuck his tongue out. When she told him she wanted to see his "frog tongue" again he would stick it out again. Just goes to show that h is aware of whats going on around him sometimes and it was probably good for him to hear us laughing a little. I bet he was just sad because he wants to do it too. I think we should get a better nights rest tonight and him as well. That's all for now, once again thanks again for everything from everyone. We enjoy having visitors, I just wish we were a little closer. Hopefully we will be back in Des Moines within the next couple of weeks. Goodnight!!
Hey, thanks for all the comments. To start today I wanted to give a big huge thanks to Levi's brother Isaac and his wife Stacey. They are the ones that set this blog up for us and I have gotten so many comments on how nice it has been for everyone to keep updated by this. So thanks so much for that. Elijah had an okay night, we were up a little more than the night before because they haven't been able to get the new seditation medication to where it's most effective. He seems to be coughing a lot and that is hard to watch because there isn't much we can do about it and his little face gets red as he tries to cough up the fluid in his lungs. It took awhile but they finally started the chemo last night at about midnight. They also started him on some food that is sent dirctly to his intestines so that he can get the nutrition that he needs (since he hasn't really eaten for 6 days). They also gave him a medicine to help him poop because he is recieving yet another oral medication that will burn his stomach if it sits in there, so they want to make sure everything stays moving so they don't have that problem. We want to say thank you for all of the things that everyone is doing for us, and for all the prayers that have been offered in Elijah's behalf, we are well aware that we have the best family and friends in the world! We will post another note today and let you all know how things are doing. We love you all!

Friday, December 28, 2007

Time has gone by fast today. Elijah went to surgery and got his port and according to the dr's everything went well with no complications. They are changing his continuous sedation medication to one that's more long term since they anticipate that he will be on the vent for 3-5 days. The switch over is making him agitated and I think it's hard for his body to get use to it, so he has been waking up a lot and kicking his legs and frowning. He wants me to know exactly how mad he is. The nurses are very good about getting him medication ASAP to get him back off to sleep. We just got word back about his 16:00 labs and his WBC is 10.4K. WOW!!!! That's actually within normal range and he hasn't gotten the chemo drugs yet today, so that's all from the two he received yesterday. We talked with the oncology nurse today and went over the first month of treatments and what to expect and side effects to watch for. We didn't get completely done and it was a two hour meeting. We will finish up on Monday. I'm going to be one paranoid mommy!! Any fever at all means a trip to the hospital, among other things. She told u that we could expect him to lose his hair during the third or fourth week. His other labs regarding his kidneys and liver that are working really hard right now to get rid of all the toxic dead cells are slowly on the rise which is expected. They said that the next 72 hours will be the most critical time to watch for things to go south, but they are very efficient and although its a scary thought, we are reassured that he is being very well taken care of. He is still going potty great and that is really important right now. That is the best indication that his kidneys are working. They have to watch though that his urine stays clear, because if it starts to get cloudy that can mean trouble. They put a tube down the other side of his nose so they can start feeding him tonight. So now he has a tube down each nostril. the swelling in his face has gone down, but he is still pretty puffy in his legs and feet which is just from giving him so much fluid. They gave him a dose of lasix (diuretic) last night and by this am the swelling was much better. He has a small incision on his neck from the surgery because they had to open him u in order to watch and make sure the central line went into the correct vein. So he has one on his neck and then one under the port where they inserted it under his skin. We received lots of reading materials from the oncology nurse today, and so everyone in the room (Dad, Tess, Levi and I) have all had our noses in books. I will try to do one last update before bed. Thanks for all the comments and continued prayers!!! We can't say thanks enough.
Morning all. Overall we had a pretty good night. Elijah is so much more comfortable and doesn't wake up as much. They gave him a bath and changed his bed this morning. He is scheduled to go into surgery at 13:30. They said that this shouldn't take long. As they predicted with starting the first round of chemo, Elijah's white count has dropped to 46K. They expect this to basically bottom out, which is why he will have no immune system because normally we need somewhere between 3-15K( normal count) to fight off infections. He will essentially have a count of O. They will be giving him blood this am and then he will get more platelets during his surgery. It is my understanding that once the port is in place this afternoon, they will give the next round of chemo drugs that are a part of this induction phase. Sorry if this doesn't make sense, but I myself am still trying to figure it all out. There are a total of 6-7 different drugs that are given throughout the induction phase (the first of three phases), and they are all at different times. He has received two of them already and I think there will be two or three more today. X-ray s here, gotta go!!

Thursday, December 27, 2007

We got the preliminary result from the spinal fluid and there were no cells found!!! YEA!! YEA!!! Oh, by the way Alivia found out and she was pretty happy too!! ( Check out the picture)
I put some new pictures on and they went to the very bottom of the blog, so take a peek!!
It's been a long full day of events, some okay and others hard. Elijah had been on CPAP until about 13:30 and his little body just couldn't handle it anymore and they decided he would be better off back on the ventilator. After they did that the doctor came out and said she was glad that they decided to do it then because his vocal cords were actually touching and if they waited too much longer they might not have been able to get control of his airway. He seems so much more comfortable and peaceful even though we hate seeing him this way. We got the definitive results back from pathology and it is indeed what the preliminary results showed (t-cell ALL). B-cell is the most common, but this is a close second with the kind of treatment and technology they have now. The oncologist sat down with us and started explaining the treatment, and WOW brain overload!!! They talked with us for about an hour and we got what would specifically happening in the first phase that will last anywhere from 2-4 weeks. There is way too much to explain on here, but I can tell you a lot of potential scary things could happen so I'm glad we are here for now. The other reason for the intubation is to place the port in his chest for further chemo treatments. The port is actually surgically placed under his skin and should stay for the full three years of treatments to come as long as it doesn't become compromised. They plan to do that in the am. They did a spinal tap shortly after they intubated him to collect some spinal fluid. Sometimes the cancer cells can hide in different places of the body such as the cerebral spinal fluid and the meninges in the brain, so they collected this to see if there is any there yet. They were pleased with the way the procedure went and we should have the preliminary results back hopefully later today, and the definitive tomorrow. They also gave the first of his chemotherapy medications through the spinal tap at exactly 15:08. His CO2 level had climbed to 90 from 70 and that was another big concern. They drew labs right after they intubated him, and his CO2 level was almost perfect. It's clear to everyone that this was the best move. They plan to give him another chemo med later today that's actually a steroid called prednisone. This will ultimately help when they take the breathing tube back out to keep his vocal cords from being as swollen like the first time. My brain needs a break, I will update when I can. Thanks for the prayers and kindness. Love you!!

December 27, 2008 10:30 A.M.

Good morning. After sitting for an hour and attempting to update the blog on Elijah's latest progress, Amanda lost everything due to the faulty internet connection at the hospital. She asked that I (Meredith) update since she can't sit for another hour and do it again and hope it goes through.
Late last night, Wednesday, the doctors became concerned about Elijah's breathing after being extubated. After a chest x-ray, they discovered that his right lung was not moving any air due to the strain on his body to adjust to breathing on his own. They put on what they call a CPAP, which stands for Continuous Positive Airway Pressure. This is a large mask that covers his face, which will apply pressure where he needs it to be able to get the best out of his breathing. Two more chest x-rays showed that this helped but that it wasn't up to 100% yet. When doctors listened with a stethoscope, they noticed a definite improvement. This difficulty in breathing, along with everything else his little body is going through, caused him to become quite agitated so they wanted to give him a little more sedation to calm him down and be able to rest. After administering the drug through his IV, the nurse noticed that his IV was kinked and they weren't sure how much, if any of the drug Elijah received. They administered a different kind of sedation through a suppository. Another setback for Elijah is that he is not able to exhale all of the CO2 out of his blood. The CO2 levels are still high, but the doctors are watching closely and are hopeful that the CPAP will aid in this. Hopefully in the next 24-48 hours they can begin to wean him off of the CPAP. As of this morning, they are still awaiting the official diagnosis so they can begin chemo. Elijah will undergo his first induction as soon as they have the 100% official diagnosis of exactly what kind of leukemia he has. After the 4:00 P.M. labs were drawn yesterday, they learned that Elijah's WBC had climbed back up to 146,000. After this morning's 4:00 A.M. labs, the WBC had dropped slightly to 146,000. Amanda said the resident doctor that she spoke with this morning believed that they would start chemo as soon as possible since they believe that as soon as they can shrink the thymus in his chest, that will certainly aid in his breathing. Amanda said anything can change on that decision depending on what doctor she'll talk to next.
So, the night was a bit of a setback for the Hancocks. Amanda recalled the blessing Elijah received in the beginning of all of this. She remembered that on the road to recovery, Elijah would experience setbacks and that they would have to work through those setbacks.
After visiting Elijah yesterday and getting frequent updates on his condition and watching everything else going on, I would like to echo what Amanda said about the prayers and concern being offered on their behalf. We've already seen some miracles in the dark hours and days that have followed Elijah's initial diagnosis. Please keep those prayers and messages of concern coming. I know they mean more than Levi, Amanda or Elijah can ever express.
Please check back soon for further updates.

Wednesday, December 26, 2007

12/26/07 -2330
Elijah got his breathing tube out this afternoon and it was pretty rough on him. They had to let him come out of the sedation with the tube still in place to make sure that he was going to breath on his own before they could remove it. As a nurse I watch adult women that struggle with trying to take the tube out themselves because it's just not supposed to be there, I can only imagine what my little baby is thinking about feeling this foreign body in his throat. They were able to remove the tube successfully, however there is some swelling of his vocal cords from having the breathing tube in place. They are watching him very closely because they can not give him steroids like they would normally to reduce the swelling because the steroids would suppress his immune system even more. They have and are still currently giving him other breathing treatments to try and help(I don't think they are helping much, but I leave that up to the professionals). They are walking a thin line in giving him sedation to keep him calm, but they have to be very careful not to give too much that it would affect his breathing. He HATES the small nasal cannula in his nose that is delivering the oxygen to him, but when he has gotten it off, the oxygen level in his blood drops very quickly. So pretty much he doesn't have a choice, he has to have it on. We have always known that he is strong willed, and he wants to make sure that all of the staff is aware of that too. He is a fighter, and I know that he wouldn't want anyone to think any less of him.
We want everyone to know that we have so much gratitude for all of the love, support and prayers and we know for a fact that we would not be here without it. Please consider your thoughts and prayers the most helpful thing that you could do for us. We thank everyone for everything they have done to help us out and it is so reassuring to know that we are being well taken care of. Thanks so much, we love you all!!!!
("DUH" is doing okay, trying to be as strong as my precious little boy)

Elijah Hancock

Hello all,
This is a blog to help keep everyone up to date on Elijah's progress. While Levi, Amanda and Elijah appreciate and need everyone's prayers and support, it is difficult for them to update everyone individually. As they get additional information we will update the blog so you can check back as often as you like!

-Elijah is in Room 7735 Bed 15 of the Pediatric ICU in the University Hospital in Iowa City

Elijah hadn't been feeling well for a couple of weeks. He had little energy, was sleepng a lot and had no appetite. Amanda had Alivia in to the doctor last Friday and mentioned Elijah's behavior. The doctor thought he could have a virus like mono and to bring him back in a week or sooner if Elijah had additional symptoms. By Monday he wasn't better, couldn't stand up, kept falling over and complained his leg hurt.

They went in again and the pediatrician did some blood tests for abnormalities and discovered he was anemic. finding that his white blood cell count was far higher than normal. (Normal is around 5-10 thousand- Elijah was in the 700 thousands. In the oncologist's experience no one had ever had numbers like that.) He suspected leukemia and told Levi and Amanda to get to Blank Children's Hospital.

Elijah was able to receive a blessing. He had a partial transfusion as his kidneys and liver were close to failure. They also thought initially his heart was enlarged but it ended up being his thymus gland by his heart which they were unable to see as two separate organs until the CT scan in Iowa City. Blank decided to airlift Elijah to the University Hospital in Iowa City but as there was fog they took him by ambulance instead.

Once at the Hospital in Iowa city Elijah starts a process similar to dialysis for his blood called leukophoresis. They tried to filter out the white blood cells to get them down. Even after this process he was still in the 400 thousand range. The doctors gave him a couple more partial transfusions and sedated him.

At this point Elijah is sedated and has tubes in his nose, down his throat, in both arms and groin for a total of 4 IV lines plus a catheter. They filtered his blood again on 12/25 to get the white cells down again. At one point they were able to get it to 148 thousand though his body continues to overproduce the white blood cells. ***As of 4am 12/26 it dropped to 80 thousand on his own with no assistance from the filter process.

The pediatric hematologist/oncologist said his best guess diagnosis is T cell acute lymphoblastic leukemia. This should be confirmed sometime tomorrow through bone marrow and blood tests. After the confirmed diagnosis, Elijah will be administered chemotherapy. They are trying to stabilize him, that is the goal. Once they are able to give him chemo the white blood cells will be killed quickly. His kidneys and liver will have to filter massive amounts of the dead cells afterwards so his body will be working overtime to get rid of it all.

The 4th floor of the hospital has lodging for families for 15$ per night called the Helen K Rossi Volunteer Guest House. It is a room with a couple of beds, small refridgerator, microwave, bathroom and free laundromat(bring your own detergent). A week has been paid for.
They expect Elijah to stay in Iowa City for two weeks- one in the ICU, another in the pediatric unit. Once he is stablized, they will transfer him back to Des Moines.

The doctor expects to cure him and will not be satisfied with a remission. In order to do this Elijah may have to endure a couple rounds of therapy for a couple of years.

***Just a little update as of 2:00 pm. Elijah is still intubated because they are walking a fine line with removing his breathing tube and making sure that the enlarged thymus won't compromise his breathing. We are hopeful that they will extabate him sometime today, but it might be later tonight. We are anxious to see him awake, but we are glad that for the most part he is sleeping peacefully. He does wake up from time to time and looks quite worried. Levi and I try to comfort him and it somtimes works, but he is on a lot of meds that make him disoriented. His Hemoglobin and hematocrit have dropped and if they go much lower they will transfuse him again. His potassium is also dropping, so they are trying to decide if they want to give him some or try to hold off because once they start the chemo, it will for sure rise and if his potassium gets too high it can affect his heart. He has his favorite blanket and now has a giant stuffed lion and husky dog at the foot of his bed ready to greet him when he wakes up.