DEB2448's SparkPeople Blog DEB2448's Blog on SparkPeople, home of free diet plans and a healthy living community 8/25/16 update on infection They identified the bacteria causing the infection as Stenotrophomonas Maltophilia. Apparently it is kind of a surprising bug for Drew to have. They are saying it is common in patients that are on ventilators in hospital settings, so suspect he picked it up during one of his hospitalizations somehow, and it's just come out now. It is resistant to most antibiotics, with only a few of them working to kill this infection. They started him on two new antibiotics yesterday, and today tested the... Thu, 25 Aug 2016 19:55:17 EST Infection Drew was running a fever yesterday and the protocol with this is to take cultures to be tested. By 3:00 AM his was growing which means he has an infection. They have him on a broadband antibiotic at this time they have narrowed it down to a certain family of bacteria but not a specific one yet. Since he is no longer running a fever they are hopeful that the antibiotics they have him on are doing the job, but we will know so much more in the next couple of days. Here is a picture of him to... Tue, 23 Aug 2016 21:57:56 EST Transplant Day # 2 This morning was transplant day #2. After they thawed out the stem cells and blessed them they started putting them back in Drew. This took about an hour but went well. Now we just sit and wait for the engraftment to start again. This should happen somewhere between day 10 and 14. Here are a few pictures from today. <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=" Mon, 22 Aug 2016 18:30:45 EST Last day of chemo Today they hung the last bag of chemo for Drew ,hopefully forever! Monday they will do the stem cell transplant, where they will give him back his own stem cells. Then it will be just waiting for him to engraf again. We know from the last time this will take somewhere from 10 to 14 days in which his counts will be down and he will be at his lowest.Here are a few pictures of today. <BR> <BR> <img src=""> <BR> <BR... Thu, 18 Aug 2016 16:09:43 EST Tests Done - Getting Ready For Transplant 2 Josh, Heidi, Molly and Drew have had a great month at home , with only a couple trips to the emergency room to have his feeding tube replaced. This wonderful home time will be coming to an end again though as they prepare for Transplant number 2. He went through tests yesterday and today and was given the OK to go into uncharted territory as Mayo is just beginning to do two transplants for kids like Drew with Stage 4 (high risk) Neuroblastoma. He will be admitted to the hospital on Sunday ni... Sat, 13 Aug 2016 00:15:19 EST 5 generations While Drew is home we decided it was time to get some more 5 generation pictures. We took these when Molly was a baby but had not taken any since Drew was born. Here are a few pictures of us enjoying that day visiting my grandmother that is 96 years old. Of course the first picture is of the 5 generations. (My grandmother, my mother , me , my son and then Molly and Drew. <BR> <BR> <BR> <img src=""> <BR> <BR> <... Mon, 1 Aug 2016 16:30:45 EST Six Months In Six months ago I got a phone call from Josh saying the three words that has changed all of our lives, Drew has cancer.At that time Drew was only 21 months old In the last six months Drew has had 6 rounds of chemo therapy, 7 surgeries, 2 infections, and one bone marrow transplant, more CT scans and MRIs than they can count and 2 MIBG scans. It has been an emotional time for me but thanks to the positive attitude of Josh and Heidi and Drews amazing smile most of the time, we have made it this... Sat, 23 Jul 2016 13:48:46 EST Home!!!!! Molly stayed with us this last week, It was a lot of fun to have her around for a few days. Drew also has rebounded far better than anyone thought and was released from the hospital yesterday and other than a few check ups will not have to check back in for his 2nd transplant until August 15th if he has no complications this month. I have a few more pictures to share. The first one Heidi took about a week before Drew had to check in for the 1st transplant since she knew he would not be home... Sun, 10 Jul 2016 12:14:28 EST Engraftment Begins for Drew Well, we are excited to have some good news! Drew is starting to have some counts! The team came in on rounds and confirmed that engraftment is beginning, or the stem cells are starting to grow in his bone marrow! His first counts after engraftment started was 310 with 500 being the number they were looking for, yesterday he was already up from 310 to over 900! Here are a few pictures from this week. <BR> <BR> <BR> <img src=" Fri, 8 Jul 2016 11:02:15 EST More Pictures (Transplant day) Here are a few more pictures from transplant day and today . Drew's counts have now bottomed out. He is still getting sick 4 or 5 times a day. After a blood transfusion today he is feeling a little better. Since he is running a fever now he is on 3 different anti-nausea meds, 2 different pain meds, 2 antibiotics, and the drug to stimulate his bone marrow to bounce back. <BR> <BR> <BR> <BR> <img src=""> <BR> ... Wed, 29 Jun 2016 17:23:54 EST Transplant day is here It's transplant day!! They thawed out the stem cells in a hot water bath, then had a blessing over the stem cells, before they hung the bag and in just under 30 min, an episode of Paw Patrol worth of time, 9.5 million of Drew's stem cells dripped back in him. It will take 10-14 days for these little babies to grow! Pray they do what their suppose to, and for Drew to be as comfortable as he can be during what we keep being told it will be a long 10-14 days! I have a lot of pictures from today,... Mon, 27 Jun 2016 15:00:34 EST Day T -7 Drew the first day of chemo (what the Doctors call Day T-7) <BR> <BR> Yesterday, Day -7 as they call it (Day 0 being the actual stem cell transplant following all the chemo), was the start of the high dose chemo. They got it going around 11 a.m. And so far he's doing well, full of energy and spunk! It's still pretty early, the nasty side effects are probably still to come, but we are taking each day at a time and enjoying his antics! The killer so far has been the protocol with this high-d... Tue, 21 Jun 2016 17:59:20 EST Test Results -Getting Ready for the 1st Transplant Surprise! They do not actually have to check in until Sunday night at 6 p.m., with the chemo drip starting at 10 a.m. on Monday morning. There was a little miscommunication....but they are excited for a bonus Father's Day weekend at home!! They got great news from the scans and tests!! The MIBG scan, which shows the cancer, showed "marked" improvement with most of the cancer "completely resolved", save for a few places. And there was no new growth shown. Apparently the only better result c... Sun, 19 Jun 2016 01:17:42 EST Drew after all the tests are done Drew having some fun after all his tests are done, guessing sounds from the road above them. Sat, 18 Jun 2016 01:18:21 EST Preparation for Stem Cell Transplant Tomorrow will be the day that Drew will have to be at the hospital to start 10 or so tests before they can start the next phase of his treatment the bone marrow transplant and then the stem cell replacement. They did hear from insurance today that they have approved the 2nd transplant which will give Drew a 18% better chance of NOT having a relapse. First will be a surgery to have a bone marrow biopsy tomorrow, as well as be injected with the dye for the MIBG scan Thursday. Then Thursday t... Tue, 14 Jun 2016 22:23:02 EST Molly and Drew sprinkler fun Molly and Drew enjoying some sprinkler fun this afternoon Sun, 12 Jun 2016 17:26:07 EST New Treatment Plan For Drew? Yesterday Josh and Heidi had a meeting where an Oncologist presented new research, showing that back to back transplants can give a 15-20% better chance of no relapse (which with Nueroblastoma, is a really uphill battle to treat the second time). This study was just presented at a conference last weekend, and one of our Oncologists was there and immediately thought of Drew. It's not protocol yet, the study still needs to be peer reviewed and published, but these results are very exciting. ... Sat, 11 Jun 2016 01:16:01 EST Drew has his smile back! Drew is starting to feel a lot better and even felt like playing today. <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=""> <BR> Tue, 7 Jun 2016 18:08:34 EST Test Results Back Well unfortunately, our suspicion that something more was going on with Drew was true. Yesterday he started having diarrhea in addition to the fevers, which really got worse overnight, and today they confirmed he has a severe case of C diff, a gastrointestinal infection. They started him on the stronger of the two antibiotics they use to treat this, which he'll be on for 10-14 days. We are told to expect another 2-5 hard days for him as it begins to clear up. It's not an uncommon thing fo... Sun, 5 Jun 2016 01:18:54 EST Back to the hospital Heidi took a pretty sad Drew into the hospital this morning. He is having fevers, and seems to be in some pain. The doctors are investigating if it is anything more than the usual bottom of his chemo cycle, but so far all we know is little Drew could use some prayers to feel better soon! <BR> <BR> <BR> <BR> <img src=""> Thu, 2 Jun 2016 20:18:01 EST Homeward Bound Drew was just released from the hospital after round 6 of chemo, here are some of the pictures of him during round 6. <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src="... Sat, 28 May 2016 20:37:59 EST round 6 Round 6 of chemo for Drew started Wednesday night and will run for 24 hours a day for 3 days. so he will finish up with this round Saturday night. Here he is in his room getting ready for them to start! <BR> <BR> <BR> <BR> <img src=""> Fri, 27 May 2016 11:46:22 EST Pictures from the "Bowling for the Beckers" Benefit They had a benefit for Drew yesterday and I just wanted to share some of the pictures from it with you all. <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <img src="http://photosaws.spark... Sun, 22 May 2016 20:45:08 EST 5-19 Update on Drew Drew has enjoyed his week at home and is doing better each day. If his followup checkup with Surgery goes well next Wednesday, he'll begin the 6th and final round of "regular" chemo. The bone marrow transplant involves high dose chemo, but is kind of it's own thing entirely. Obviously, we are going to be so grateful to get the chemo cycle stage of his treatment behind us! Here is a couple of pictures. The first one is of Drew enjoying some outside time and the second one is a picture of Moll... Thu, 19 May 2016 21:45:31 EST Home Drew got home today around noon! <BR> <BR> <BR> <img src=""> Sun, 15 May 2016 18:51:38 EST May 13th Update on Drew Up and feeling so much better today <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=""> Fri, 13 May 2016 23:46:09 EST Surgery Results Knowing that Drew's surgery was yesterday (May 11th) I did not sleep very well last night. In fact the last time I looked at the clock it was 2:30 AM. After getting up to go to work this morning my husband came back in the bedroom at 6 AM and said he thought we should go up and be there to support Josh and Heidi during his surgery. So I got up and doing very little we were on the road before 6:30 AM and started our 3 hour drive to Rochester. By the time we got up there they were in pre - o... Thu, 12 May 2016 01:19:54 EST Park Fun Here is Molly and Drew enjoying a sunny day playing in the park today. <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=""> Mon, 2 May 2016 22:52:10 EST Love Your Melon Love Your Melon is an apparel brand run by college students across the country on a mission to give a hat to every child battling cancer in America. - A group of students from the Love Your Melon UMR chapter visited kids at Saint Marys in honor of National Superhero Day. Heidi was interviewed and on two local news channels in Austin, They also showed many pictures of Drew having a great time with the Love Your Melon ambassadors Here is part of Heidis interview { Heidi comments }(One parent,... Fri, 29 Apr 2016 14:30:35 EST Home from round 5 and enjoying the rain! Drew was released from the hospital yesterday. Here he is outside playing in the rain puddles today! The other picture is of him in the hospital Saturday <BR> <BR> <BR> <img src=""> Wed, 27 Apr 2016 21:39:26 EST Round 5 of chemo Round 5 of chemo starts today for Drew. He was admitted to the hospital yesterday, they did the surgery to put the central line back in. Here is a few pictures of him and Molly enjoying the week at home. <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <BR> <img src="http://photosaws.... Sat, 23 Apr 2016 01:30:06 EST Stem Cell Harvest Today The day finally arrived! Drew's numbers were where they were suppose to be! They started the stem cell harvest this morning around 9 AM and finished it about 1:30 PM. They came in about 2 hours later to tell them it had been a success They need 8 million stem cells, and Drew gave them 19 million!!! They will be taking the catheter out of his neck today, giving him platelets and planning on sending him home yet tonight. If all goes well at home he will have to go back on Thursday for a bl... Sat, 16 Apr 2016 19:46:44 EST Back In The Hospital Running A Fever <img src=""> <BR> <BR> <BR> <BR> Drew is back in the hospital running a fever. They are hoping it is a virus and not an infection,If the culture does not grow they will go ahead and put in the muherker (catheter in his neck) for the stem cell collection, and hoping his numbers will be back up so they can do that by the end of the week. Mon, 11 Apr 2016 17:31:26 EST Round 4 Done Round 4 of chemo was finished yesterday , and here is Drew today on the way home. Praying everything goes good this week so they can do the stem cell harvest this time. <BR> <BR> <BR> <BR> <img src=""> Wed, 6 Apr 2016 15:58:20 EST Drew update round 4 Drew started round 4 of chemo, we are now praying that they will be able to do the stem cell harvest in about 12 days. Here are some pictures from today. <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=""... Sun, 3 Apr 2016 20:32:37 EST My New Haircut I do not normally like sharing pictures of myself but I got my hair "buzzed" today in support of Drew and wanted to share my new look! <BR> <BR> <BR> <BR> <img src=""> Sat, 2 Apr 2016 19:42:31 EST Happy Birthday Drew Happy 2nd Birthday Drew! We got to spend the day with Drew and the rest of the family. He was in such good spirits today. <BR> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <BR> <BR> <img src=""> Sat, 2 Apr 2016 00:34:50 EST Roller Coaster Week This week has been a roller coaster ride for Drew, with many ups and downs. He did get to go home last Monday but by Tuesday afternoon he was not holding down anything. After Heidi talked to their team of doctors at Mayo , it was decided she needed to bring Drew back to the hospital to get some anti nausea meds and fluids by IV through his central drain line. This first picture is of him on Tuesday. <BR> <BR> <img src=" Mon, 21 Mar 2016 23:08:02 EST Drew update 3-14-16 <img src=""> <BR> <BR> <BR> On their way home! Drew has been in the hospital since Feb. 16th. If everything goes good at home, he will not have to be back to the hospital until next Monday when they will start harvesting his stem cells. Mon, 14 Mar 2016 16:50:54 EST Drew enjoying some "outside" time They got the OK yesterday for Drew to spend some time outside. He really enjoyed this since he has only been outside the hospital for 4 days since January 20th. <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=" Wed, 9 Mar 2016 18:19:51 EST Bone Marrow Biopsy Results <img src=""> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> Drew had another bone marrow biopsy done on Wednesday March 2nd, at the same time they did another CT scan of his head to see how the blood clot was doing. The results showed that the blood clot has almost completely resolved. The results of the bone marrow came in... Sat, 5 Mar 2016 17:05:27 EST 2-28-16 Update on Drew Drews last day of Chemo this round was on February 20th, but since he has had a bunch of setbacks this rounds , he is still in the hospital. On Tuesday they found he had a hemotoma inside the intestine wall that was causing a blockage so they had to put in a suction tube. The doctors feel it is now "resolving" itself but now his oxygen levels are lower than they should be so they are having to monitor that part of it. He has also spiked a temperature again, but that seems to be a part of (a... Sun, 28 Feb 2016 11:50:46 EST Round 2 of chemo starts today <img src=""> <BR> <BR> <BR> Here is Heidi and Drew back in the playroom at the hospital waiting to start round 2 of chemo today. He did get to go home on Thursday and spend the weekend at home. They had to be back at the hospital this morning. Tue, 16 Feb 2016 18:02:04 EST A few pictures of Drew at the hospital this week <img src=""> <BR> <BR> This is the dog they brought in to the hospital play room today. Drew had a lot of fun with it. <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> Drew playing (phone) with the nurse call buttons <BR> <BR> <BR> <BR> <img src=""> <BR> <... Wed, 10 Feb 2016 22:53:16 EST Drew cruising Drew walking the hospital halls! Sun, 7 Feb 2016 18:55:52 EST Happy Friday Drew Drew on one of his frist walks. It is so good seeing hime up walking instead of laying in bed. <BR> <BR> Can anyone see the video? Mine just says video about ready. I have never posted a video blog before and am not sure if I did it right. Fri, 5 Feb 2016 22:27:38 EST February 5th Update on Drew The following is part of Heidis post on caring bridge tonight. <BR> <BR> <BR> Hello friends and family! Sorry for the delay in reporting the results of the CT scan yesterday. The lag of information may hint that we got good news, and we did! The clot is stable, so they will NOT be treating it with anything more. We will be on oral antibiotics for the next 10 days for the infection, and will check the area on a future CT scan. Hooray! One bullet dodged. And at the doctor rounds this... Fri, 5 Feb 2016 21:30:03 EST Update on Drew The following is pretty much copied from the update Josh and Heidi did today on Drews caring Bridge page. <BR> <BR> <BR> <BR> We found out last night that the Cancer is also present in Drew's bone marrow which makes his cancer stage 4. Due to this he will need a lot stronger chemotherapy and it will take longer to cure him. There will be a combination of several things including chemotherapy, bone marrow transplant, surgery, and probably radiation. They are going to start chemotherapy t... Tue, 26 Jan 2016 23:20:45 EST Please Pray for Drew <img src=""> <BR> <BR> <BR> Please keep Drew in your prayers , Due to the suspicion of a mass Drew had an C-Scan done which identified a tumor which is approximately covering half of his abdomen. After all of these tests were looked at and studied we were told that the tumor is cancer. they will do surgery today to do the biopsy, put in a central line, and bone marrow test. Fri, 22 Jan 2016 07:55:37 EST Happy Birthday Drew <img src=""> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> Happy 1st Birthday to my Grandson Drew!!! Thu, 2 Apr 2015 00:41:31 EST