DEB2448's SparkPeople Blog http://www.sparkpeople.com/mypage_public_journal.asp?id=DEB2448 DEB2448's Blog on SparkPeople, home of free diet plans and a healthy living community SparkPeople.com http://assets2.sparkpeople.com/assets/nav/logo_spark.gif http://www.sparkpeople.com/ Warrior Wagons http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6318510 "Drew" means Warrior, and ours certainly was. Josh and Heidi are putting together wagons for other Warriors at St Mary's fighting pediatric cancer. <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/0b6111bf-9e62-49f1-b397-84c48567df0d.jpg"> <BR> <BR> <BR> The first wagon has arrived and been put together. They will be filling each wagon with "comfort items" and plan on giving them to each new pediatric cancer patient at Mayo ,St. Marys campus (this is where Drew spent over... Sun, 19 Feb 2017 20:30:34 EST We Love You Drew http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6301614 This afternoon at 2:15, Drew entered into Paradise and Heaven has gained an amazing angel. Rest In Peace. <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/03a62e1f-0a6b-461c-a257-5a98c0fb1422.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/118837c7-1405-4bb3-93a0-2d2bb44a889e.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/084c9364-4ec0-4473-9a2c-f1cd22a5d225.jpg"> <BR> <BR> <BR> <BR> <img src="http://phot... Thu, 19 Jan 2017 21:32:46 EST January 15th Update on Drew http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6298917 Like normal I am just going to copy most of Heidis caring bridge post, as that way I do not get things wrong. I do still plan on sharing the rest of the Disney trip, but more serious things to share today. As always her post is longer but this is the main points. <BR> <BR> <BR> <BR> Drew's condition changed a lot from yesterday. His breathing became increasingly labored, and his pain level continue to increase. A chest x-ray was done and it showed a lot of fluid in the lungs, as well as... Sun, 15 Jan 2017 23:02:51 EST In the Hospital Again http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6297648 In the next day or two I will share some more of the amazing make a wish trip, but todays news is not so good, part of this is from Heidis caring bridge post. Her post is longer but this is the main points of it. <BR> <BR> <BR> <BR> Well Friday the 13th has been a dramatic day for us. Yesterday Drew's eye was looking puffy again, so I called into Mayo to see if we might need to do more antibiotics. After they looked at him, different antibiotics were prescribed assuming it was the infecti... Fri, 13 Jan 2017 22:00:27 EST Disney World Day Three Part Two http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6296956 In the afternoon they did some of the activities at the Give Kids the World Village! <BR> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/55cb4d49-2987-4611-b28c-0811f1ee5066.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/d7747f47-7ba5-4fc2-a8c2-8fcf38744b5c.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/95631932-e667-41b1-bffc-d0d0b2ba97b1.jpg"> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/... Thu, 12 Jan 2017 20:27:32 EST Disney World Day Three Part One http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6296236 Day 3 (Friday) they spent the morning at Sea World. <BR> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/2b835d19-cb9e-4b8d-b8a3-eaef666011de.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/83acce24-9869-432a-b2ab-3bef12627a3b.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/b08d80a3-d5b7-4dce-8c5c-dccd1e785540.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/587459da-9901-4f9b-b... Wed, 11 Jan 2017 20:19:53 EST Disney World Day Two Part Three http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6295588 Before I share the last of the photos from day two, I wanted to let you know that the last time I talked to Heidi, they had landed in Minneapolis and was on their way home! <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/fd47d236-12cc-4162-8ff7-13cb508f513d.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/0bed48e1-c82f-449d-adea-b3fcb36a4507.jpg"> <BR> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/8f79fa10-5b85-... Tue, 10 Jan 2017 20:49:19 EST Disney World Day Two Part Two http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6294862 Heidi said that even though Drew did a lot of "boy" things, he liked meeting the princesses almost as much as Molly did! <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/bd15b38f-5350-43ed-b525-665174b35974.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/296909ad-fcfc-4e61-bcb8-9421e3c3463d.jpg"> <BR> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/9bcc38c2-4e3f-4940-8b27-2a1c48f8cd4b.jpg"> <BR> <BR> <BR> <BR> <BR> <... Mon, 9 Jan 2017 20:47:52 EST Disney World Day Two Part One http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6294129 Day Two (Thursday) was Magic Kingdom day! <BR> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/582bba1e-b06e-4d88-86fb-935bb9ee1db4.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/5be80bf2-d74e-49d3-aea1-5e5f041e8e4c.jpg"> <BR> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/a3783630-8bd4-4db6-a1aa-b832f4a11c3d.jpg"> <BR> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/1377610f-79ef-4133-... Sun, 8 Jan 2017 20:22:49 EST Disney World Day One Part Three http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6293502 Heidi said that this park in Give Kids The World is right across the street from where they are staying! It sounds like they do the carousel-ride each morning! <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/93da6c5e-de86-4eb9-95d6-9293867c87ff.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/37d1af83-e7c5-46ca-b20e-65fe72e243c2.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/644eebff-afb1-41a0-a661-e6acd32201... Sat, 7 Jan 2017 21:43:19 EST Disney World Day One Part Two http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6292864 Today I am going to share some pictures of where they are staying in the "Give kids the world" village! Heidi said Drew was napping when she took these so she did not get one of the kids room. It looks amazing! I hope you guys don't get tired of pictures before I am done, but I just want to share as much of it as I can with you all! They are all having such an amazing time and I am so happy Drew is still feeling well enough to enjoy the trip. <BR> <BR> <BR> <BR> <img src="http://photosa... Fri, 6 Jan 2017 21:22:41 EST Disney World Day One Part One http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6292181 Tuesday night they they went to Minneapolis and stayed in a Motel to be at the airport early Wednesday morning. These pictures are of the limo ride, at the airport and boarding the plane! Like everything in Florida make a wish paid for all the things in Minneapolis also. With all the pictures I have it will probably take me 2 weeks to blog there one week trip! <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/2a4a294d-b99e-4a76-a2d1-11156f17e9e4.jpg"> <BR> <BR> <BR> ... Thu, 5 Jan 2017 21:06:44 EST Make a wish Reveal Party http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6288276 The make a wish reveal started yesterday at the Austin John Deere dealership. Drews favorite thing right now is farm equipment! They 1st gave Josh, Heidi, Molly and Drew a ride on a combine and then a tractor, then they gave rides to all the other kids there that wanted to ride. When that was done a fire truck showed up ( Drews 2nd favorite thing) to give them a ride to the Pizza Ranch where make a wish announced that they will be going to Disney World next week! Here are a few pictures from ... Sat, 31 Dec 2016 22:39:11 EST ER Visit http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6286662 Last night Drew became very restless and was obviously experiencing more pain than he had been. His eye was really swollen this morning so they called the Doctor and ended up taking him to the ER in Rochester. They were told it was either an eye infection, a blood clot in his brian, or pressure from further disease spread in his eye and a CT scan was ordered. The CT scan showed that it's an eye infection!! More good news too, there is no cancer seen on the scan of his head, or any sign of ... Wed, 28 Dec 2016 20:44:34 EST Personal Visit From Santa! http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6283942 Heidi posted this on facebook tonight! <BR> <BR> <BR> So THIS happened tonight! How amazing and awesome. Thank you to whoever set this up!!! <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/4dace065-538d-4174-b2c8-17ed3ddf84ab.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/9e687813-7eb2-476c-9869-c34df96f075a.jpg"> Wed, 21 Dec 2016 21:10:38 EST Decisions made http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6283166 Most of this is from Heidis caring bridge post today, but wanted to update everyone. <BR> <BR> <BR> <BR> As far as the big picture goes, we made some decisions. Last post I shared our feelings and motivations behind our decisions, but let me also give you the specifics. All the options for treatment which are close(Minneapolis, Wisconsin) are in Phase 1 of trials. This means they are still figuring out the dosage for the drugs and do not have much preliminary data. We feel that is too... Tue, 20 Dec 2016 01:37:33 EST Blue http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6281929 It looks like Molly and Drew really like the newest member of the Becker family, their new fish they named Blue! <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/4810a3a4-b9c7-4520-aadc-1cd64efc7fbe.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/8b89cd19-ffb4-4da0-9e9f-67460bcf47b4.jpg"> Sat, 17 Dec 2016 01:57:36 EST Test Results http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6280190 Josh and Heidi did not get the news today that we were hoping for.The mass is bigger on his lymph node behind his bowel that we were watching. In addition , there is also a new mass behind his heart. They think there is probably some in his lungs as well. The team will contact experts from around the country, as well as discuss together what all our options are from here. But they were pretty clear that the scans were very discouraging and suggests that this disease is the "explosively" sprea... Tue, 13 Dec 2016 01:27:07 EST Back Home http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6277795 Drew was discharged from the hospital on Saturday. He is still pretty sick from the chemo, but is starting to feel a little better each day. Here are a few pictures from this week. <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/dcb932b0-a514-47fd-8aff-2fd3307bcff4.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/fffe9401-8c54-4a6a-b2d6-1879e68001a5.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/719716d5-843e-... Wed, 7 Dec 2016 20:55:51 EST Clinical Trial Round 2 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6273520 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="http://photosaws.sparkpeople.com/guid/202a98fe-fc75-4858-a782-5e9e284a4d20.jpg"> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/6f2ecab9-d5a9-42f5-b7a3-2e20cad3efaa.jpg"> <BR> <BR> <BR> <img src="http://photosaws.sp... Mon, 28 Nov 2016 21:25:54 EST Thanksgiving 2016 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6272556 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="http://photosaws.sparkpeople.com/guid/98cfc4ca-f3c2-44f6-b856-1a25e2f44312.jpg"> <BR> <BR> <BR> <BR> <BR> <img src="http://photosa... Sat, 26 Nov 2016 22:20:12 EST Results from hearing test http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6270539 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6262431 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="http://photosaws.sparkpeople.com/guid/19fc1beb-d486-4f0b-bbd0-5db127d3e100.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/40a1f5bc-cdff-4d90-8ca6-200f411deca7.jpg"> <BR> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/210e9e3f-b3... Sat, 5 Nov 2016 19:11:29 EST Next step for Drew http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6261611 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6260470 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6257617 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="http://photosaws.sparkpeople.com/guid/9cbf354c-ff35-49dc-bf0d... Wed, 26 Oct 2016 21:27:27 EST Ring The Bell http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6253729 "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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6252493 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="http://photosaws.sparkpeople.com/guid/8d469862-fb2d-4ce7-96ea-b24492969c27.jpg"> <BR> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/7d0d4954-efd8-4794-9bae-9a76922a7623.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/481d3e8e-64dc-4a14-8f7f-b89fc0330e17.jpg"> <B... Sun, 16 Oct 2016 16:48:01 EST Pumpkin Patch http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6249058 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="http://photosaws.sparkpeople.com/guid/95979770-a870-4912-a72b-31046959991b.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/23e143ef-e3b2-4ad1-acb8-71c504f6533a.jpg"> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/cabc8352-dd2d-... Sun, 9 Oct 2016 22:30:40 EST Radiation begins http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6245996 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6243118 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="http://photosaws.sparkpeople.com/guid/925c6281-3eab-449a-a288-4fae584ee748.jpg"> <BR> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/bf02f0ba-9b2f-4c2f-876d-ac0b08a3e22a.jpg"> <BR> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/18... Wed, 28 Sep 2016 10:37:08 EST Gearing up for radiation http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6238783 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6238197 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="http://photosaws.sparkpeople.com/guid/ef261ea2-480c-4588-9bad-6bc35f37933c.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/guid/... Sun, 18 Sep 2016 23:14:29 EST Home after 25 days http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6235316 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6231169 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="http://photosaws.sparkpeople.com/guid/2d4fe572-9ac2-4f97-bd04-ac25179f0487.jpg"> <BR> <BR>... Tue, 6 Sep 2016 14:32:49 EST Drew is beginning to engraft. http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6228658 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6228069 <img src="http://photosaws.sparkpeople.com/guid/d7c36e88-dec1-4fe1-b440-623364839599.jpg"> Wed, 31 Aug 2016 23:29:08 EST 8/25/16 update on infection http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6224500 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6223396 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6222674 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="http://photosaws.sparkpeople.com/guid/b9b54287-3813-46d0-966b-b43df6dc6601.jpg"> <BR> <BR> <BR> <BR> <img src="http://photosaws.sparkpeople.com/gu... Mon, 22 Aug 2016 18:30:45 EST Last day of chemo http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6220426 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="http://photosaws.sparkpeople.com/guid/fc435bca-9e1e-4fbc-8a2b-19682cb2a283.jpg"> <BR> <BR... Thu, 18 Aug 2016 16:09:43 EST Tests Done - Getting Ready For Transplant 2 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6217042 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6210489 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="http://photosaws.sparkpeople.com/guid/4691f604-4b2a-4d50-bde6-39e8d4ce7ca6.jpg"> <BR> <BR> <... Mon, 1 Aug 2016 16:30:45 EST Six Months In http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6205392 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!!!!! http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6198061 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6196946 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="http://photosaws.sparkpeople.com/guid/ed9c7ac0-77ed-4f81-99be-2... Fri, 8 Jul 2016 11:02:15 EST More Pictures (Transplant day) http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6191922 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="http://photosaws.sparkpeople.com/guid/0fad32f8-055e-408f-a5a3-0c6d16fb500b.jpg"> <BR> ... Wed, 29 Jun 2016 17:23:54 EST Transplant day is here http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6190638 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6187079 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 http://www.sparkpeople.com/mypage_public_journal_individual.asp?blog_id=6185488 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