DEB2448's SparkPeople Blog DEB2448's Blog on SparkPeople, home of free diet plans and a healthy living community Clinical Trial Round 2 Drew was admitted to the hospital this morning here he is Cruising the halls, walking through the courtyard, finger painting, checking out the poinsettia tree and outside lights...whew! It's been a busy first day of round 2!! <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <img src="http://photosaws.sp... Mon, 28 Nov 2016 21:25:54 EST Thanksgiving 2016 Our Thanksgiving this year was so nice in some ways but also sad as we know Drew may not be physically with us next year. We continue to be so grateful for the time we have with him. We enjoyed all the little things that so often get taken for granted during the busy holiday time. Here are a few pictures from our day. <BR> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <BR> <img src="http://photosa... Sat, 26 Nov 2016 22:20:12 EST Results from hearing test Drew's hearing evaluation showed that he does have the hearing damage that they were warned could result from the strong chemo he's received. The hearing loss currently is just in the high pitches, outside of common vocal range. At this time they are going to kind of put this on the back burner since it isn't effecting his daily life. They will wait to see how these first two rounds of the trial go and move forward with addressing his hearing issues as the big picture gets a little m... Tue, 22 Nov 2016 02:09:10 EST Saturday November 5th Here are a few pictures from this week, Quality of Life is the most import thing right now.Who knows what next month is going to be like, but today Drew is enjoying life. <BR> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <BR> <img src=" Sat, 5 Nov 2016 19:11:29 EST Next step for Drew The CT scan showed there is a 2 cm mass on a lymph node behind his bowel, that has doubled in size since the June scan. It is certain enough that it is Nueroblastoma again that they aren't even going to do the biopsy because it also was so "hot" on the MIBG scan. From here, we are going to begin a trial at Mayo on Monday, that gives him new chemos and antibody therapy in 3 week cycles, starting each with infusions for a week at the beginning. We will complete two of these cycles and re-sca... Thu, 3 Nov 2016 22:22:27 EST Test Results NOT GOOD I am just going to copy most of this from Heidis caring bridge post from today <BR> <BR> <BR> <BR> We did not get the news today that we expected. Everyone assumed these scans would be good, but they were not. There are two spots that are larger and brighter then in June. We will have a CT scan and a biopsy tomorrow to confirm it is Neuroblastoma. Then Thursday we will meet with Oncology to discuss the results and our options. The oncologist is 90% sure it is progressed disease, which ... Tue, 1 Nov 2016 18:04:25 EST Tests this Week Drew went in today to get the radio-active dye put in him for his MIBG scan, and an echocardiogram again. Then tomorrow he has his scan and a bone marrow biopsy. They will find out the results from these tests on November 1st. Here are a few more pictures. The 1st one is from today, he had just tried to suck on the lemon right before she took the picture. You can tell by the look on his face! <BR> <BR> <BR> <BR> <img src=" Wed, 26 Oct 2016 21:27:27 EST Ring The Bell "My treatments are done, it's course has run, and I am on my way" <BR> <BR> <BR> Today was Drew's last radiation treatment! They have a tradition of ringing a bell after you are through, and above is part of the inscription. Drew rang it loud!! <BR> <BR> <BR> Moving forward the plan is to have a cancer scan, bone marrow biopsy, and echocardiogram again to re-stage next week. Then, the 6 month course of immunotherapy cycles will begin November 7th. <BR> <BR> <BR> Here are a few pictur... Tue, 18 Oct 2016 22:29:51 EST Fall Fun Gorgeous fall day out today! You'd never know Drew was in the middle of radiation, or all he's been through in the last 8 months. <BR> <BR> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=""> <B... Sun, 16 Oct 2016 16:48:01 EST Pumpkin Patch Going to the pumpkin patch has always been one of Heidi's favorite things to do. They have been going to the same one since Molly was a baby. Here is some pictures from this years trip. <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <img src=" Sun, 9 Oct 2016 22:30:40 EST Radiation begins Today was Drew's first day of radiation. I have a few pictures from today to share. It took a little longer than normal and will each day as they put him to sleep and then have to wait until he wakes up before they can send them home, they put him to sleep since he is so little they do not wan to take any chance of him moving during the time the radiation is being given to him. The one picture Heidi took is one of the first times we have seen him a little shy. Heidi found out today that he wi... Mon, 3 Oct 2016 23:43:38 EST Great Week Everyone has enjoyed this week at home with no trips to the hospital or ER so far. Here are a few pictures of Drew and Molly enjoying a fall event at the fair grounds on Saturday. <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <BR> <img src=" Wed, 28 Sep 2016 10:37:08 EST Gearing up for radiation Drew has fully recovered from transplant. All of his counts are up and not being checked anymore.He is off all anti-nausea and pain medications. All of his fingernails have fallen off, ( a side effect from the chemo) Thursday he had his central line put back in, and also had a MRI, both of which went well. Today they took him for the simulation/mapping day for radiation. Another MRI, and a CT scan were done, as well as molds and even about 6 freckle-sized tattoos to guide the treatment... Mon, 19 Sep 2016 22:53:59 EST Weekend Visit Since Drew is doing good at this time and between chemo and radiation, they decided to visit us this weekend. It was the first time Josh , Heidi or Drew had been here to visit since December 2015. It was so great to have them all here and we all had such a good time, here are a few pictures from our weekend! <BR> <BR> <BR> <BR> <img src=""> <BR> <BR> <BR> <BR> <img src=" Sun, 18 Sep 2016 23:14:29 EST Home after 25 days This video blog is of Drew and Molly having a little fun at home. He has now been home for about a week. He will go back in on Thursday and they will put the central line back in (this had to come out with his last infection) and then do an MRI on him. This will help the radiation team decide on his radiation treatment plan. Josh and Heidi have a meeting next Monday with the radiation team and his radiation is scheduled to begin on September 26th. Tue, 13 Sep 2016 18:44:18 EST Molly Since January 21st our family has had so much sadness with Drew being diagnosed with stage 4 cancer BUT today I am going to take some time to celebrate with Molly. Today was her first day of PreK! She's such a big girl, Couldn't be prouder, love you Miss Molly, go get 'em! Here are a few pictures the first one of Heidi and Molly and then the other two of Molly. <BR> <BR> <BR> <BR> <BR> <img src=""> <BR> <BR>... Tue, 6 Sep 2016 14:32:49 EST Drew is beginning to engraft. Today is a GREAT day. Drew's counts are coming back up!! There was some movement yesterday in the numbers, and they waited anxiously to see if today there would be more movement in the right direction, and there was!! His neutrophils, the number that needs to be over 500, is at 330 today! Praise the Lord. He is beginning to engraft. Going forward in the next few days, first his numbers need to keep rising, above 500 for at least 3 days before he can leave the hospital. But in the mean ti... Thu, 1 Sep 2016 22:54:52 EST September Is Childhood Cancer Awareness Month <img src=""> Wed, 31 Aug 2016 23:29:08 EST 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