Drew's Story
2016 was a year we all will never forget. Drew was diagnosed with Stage 4 Neuroblastoma in late January. Which meant that the cancer of the nervous system had formed a very large tumor on his adrenal gland (13 cm across), and had also spread to his bone marrow (making up 35% of the marrow at the time), and onto most of his bones. He endured so much last year, and I did my best to document, share, and learn from it all on our CaringBridge page. I have all of my journal entries archived here for reference or to catch up on our whole story.
Drew Becker
Thursday 1-20-16. We took Drew to the ER since he had some bruising and his side was tender when he was picked up. Drew and Heidi went by ambulance to Mayo in Rochester for further evaluation and testing. We had an ultra sound and X-ray when we first arrived which revealed an area of concern in his abdomen. We were sent back to ultra sound for another scan of his abdomen which revealed what appeared to be a mass. They took blood work and admitted us to the hospital.
Friday 1-21-16. 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 (at this point they do not believe that the Cancer has spread but a lot more testing will be done early next week to make sure and they will also identify the type and stage of the cancer. We will be staying in Rochester tonight and may be able to go home over the weekend. The tumor is wrapped around some critical areas so it can not just be removed this point. On Monday Drew will have another scan done in Rochester and Tuesday they are going to perform surgery to put in a central line, do a biopsy, and check his bone marrow. After the results of next week's test the most likely scenario is Chemo therapy to reduce the size of the mass so they can do surgery to remove it. Molly is staying in Emmetsburg with Grandpa and Grandma Becker for now.
Friday 1-21-16. 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 (at this point they do not believe that the Cancer has spread but a lot more testing will be done early next week to make sure and they will also identify the type and stage of the cancer. We will be staying in Rochester tonight and may be able to go home over the weekend. The tumor is wrapped around some critical areas so it can not just be removed this point. On Monday Drew will have another scan done in Rochester and Tuesday they are going to perform surgery to put in a central line, do a biopsy, and check his bone marrow. After the results of next week's test the most likely scenario is Chemo therapy to reduce the size of the mass so they can do surgery to remove it. Molly is staying in Emmetsburg with Grandpa and Grandma Becker for now.
1-22 update
We were told at 2 AM That they were able to move Drew's surgery up to today to do the biopsy, put in a central line, and bone marrow test. We are excited for the news because we can get a complete diagnosis and start treatment sooner so Drew can start to be more comfortable. Please pray for a successful surgery and a quick recovery.
1-22-16 surgery update
Drew went down for surgery at 1:00 and we were able to pick him up at 5:00. All three segments of the surgery went well and he is sleeping peacefully now. We will know a lot more information early next week once the results come back. Our hope is to leave the hospital over the weekend and have some outpatient test early next week.
1-23-16 update
Drew is continuing to recover from his surgery yesterday.... he is very sleepy today and needed a blood transfusion this morning due to lower red blood cell counts. They will continue to monitor him through the weekend and into early next week at the hospital. They have also scheduled a MIBG for Wednesday and we will get the results from the bone marrow and biopsy early next week. Once we have all the results they will put together a treatment plan which should start on Thursday or Friday. After the initial Cemo treatment and monitoring we should be released from the hospital (we are hoping next weekend).
1-24-16
Drew is a lot more awake today. He has been up since 8 AM and has not taken a nap yet. He walked up and down the hallway and played in the play room a little bit. He also started to drink better and had a little yogurt and gold fish! They are reducing the amount of fluid they are giving him and with him able to get up and about again he should be able to start eating more. Heidi is coming back to the hospital today after spending the night with Molly in Austin. We have a long road ahead and please continue to pray for little Drew.
1-26-16 update
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 this afternoon and we know Drew will be hospitalized for at least the next two weeks. They are very confident that after this first round of chemotherapy the tumor will shrink and he will start to feel relief. They are giving him medicine to hopefully reduce the side effects on his body but it will probably be a long week for him. We are taking one day at a time and looking forward to small victories as we start treatment less than one week after we found out. Molly is staying in Ames with Jim and Deb until this weekend. Thank you for all your prayers and support!
1-28-16 -- 2 days in!
Well our strong boy Drew is already 2 days into Chemo and is doing so well! This is my first post, as Josh has been updating everyone so far. So this one might be a little more long winded :) But I want everyone to know how good Drew is doing first off. Since the Chem has been started and is taking effect, all he really wants is to be is close to us. To have us beside him in bed, or holding his hand. Such a trooper! The Chemo is doing a good job also. They are monitoring us very closely these first 72 hours of Chemo. They moved us to the PICU last night for this closer monitoring. Thankfully we have not needed the resources that are better available to us here, which is another reason they moved us. It is one critical period of his treatment, and they are really watching all his blood, vitals, and urine output to make sure his body is handling the treatment. And so far it is! Praise God! Keep your prayers coming! We are now over halfway through this 72 hour period--and are hopeful that Drew can get through the rest of it. They anticipate we'll move back to the regular Peds floor by tonight if things keep going well throughout the rest of the day today. We did get the results back from the scan they did yesterday, and unfortunately they did find cancer on some of his bones. Which, since it is in his bone marrow, didn't surprise the doctors. That will be a hurdle we will cross once we get past this initial stage of Chemo and surgery for the tumor. Hopefully the chemo will kill that cancer as well, but if not, we would be looking to radiation for healing in those areas in the future. Nothing new was found on his organs however, finally one good report!
He was "with it" enough this morning to be playing with the buttons on the side of his bed! Josh and I were talking behind him and all of a sudden his bed starting reclining and we see his little finger pushing the button! We looked over and Josh saw a smile on his face. We are enjoying all of these little moments each day, and thank God for them. Josh and I are overwhelmed by all the support we are receiving. We are seeing all of your messages, posts, donations, and feeling the power in all of your prayers. Thank you all SO much for those, they mean the world to us. God bless you all, and may He continue to give Drew the strength to keep fighting so strongly!
He was "with it" enough this morning to be playing with the buttons on the side of his bed! Josh and I were talking behind him and all of a sudden his bed starting reclining and we see his little finger pushing the button! We looked over and Josh saw a smile on his face. We are enjoying all of these little moments each day, and thank God for them. Josh and I are overwhelmed by all the support we are receiving. We are seeing all of your messages, posts, donations, and feeling the power in all of your prayers. Thank you all SO much for those, they mean the world to us. God bless you all, and may He continue to give Drew the strength to keep fighting so strongly!
1-29-16 update
Drew was able to get out of PICU this morning and we are back to the normal PED floor! He was also just given the okay to start eating and drinking. He had a couple bites of food and water and we will slowly increase how much he is getting. Heidi and I are both excited to be through the first 72 hours of Chemo which is one of the high risk times during treatment. So far his only real side effect from the Chemo is that he is a little fussy but nothing crazy. He does have a little fluid in his one lung but they are giving him some medicine today to try to remove that. Molly is coming back up here today from Ames and we are all excited to see her and start our "new normal" around here. We appreciate everyones support and prayers!
1-31-16 Done with 1st Round of Chemo!
11 days since we our initial emergency room visit that started it all, and we already have the first 5 day round of Chemo behind us. He has remained fairly calm throughout the treatments--maybe a just a little fussy! But if that's all, I'd say that's pretty good! The picture below is his usual position, just chillin', being his laid back self. Nurses have commented on how well he takes medicine and how still he lays to have things done to him. His body continues to respond well to the Chemo as well, they say the tumor is already shrinking and his body will get better and stronger consequently. The doctors are watching his vitals closely and are treating any side effects that are coming up. So far nothing alarming or unexpected. Pray that this continues to be the case! In addition to the things they are monitoring, the challenge this week, and what we need to overcome in order to go home, will be to get him eating and drinking again on his own. They are starting the feedings again through his tube and are hoping his little tummy can start to handle it. He is back on a no-food-or-drink diet until at least tomorrow, after an MRI that is scheduled. Since the skull is one of the places they found cancer on his scan last week, now they are checking his brain. Obviously pray that none is found!
Molly is back with us now, which was such a great reunion. Drew seemed calmer when she came back, and seemed to be back to his usual, watching the show that is Molly! We can tell she's been out of routine for over a week, and the next challenging front will be to transition to our new normal. And that starts this week. Josh is going to go back to work for at least half days since Drew is fairly stable and Chemo is over for this cycle. We have relatives from Kansas City that have come to stay at the house with Molly during the mornings while Josh is at work to take care of her. I am here at the hospital with Drew then for now, and we'll see where the week takes us. We all can shift around as the week goes on, as we see how Drew is. And how the weather turns out! Drew and I might enjoy watching it snow this week!
I also must share how grateful we are for all the support we have recieved. From our community, from our family and friends, from strangers! I had someone buy my coffee today on my way out of town that had been following us and praying for us, and I had no idea who she was. After we talked, the clerk even said, "hey, the 20 month old boy? I know you too and been reading your updates!" So thank you to them if they are reading this! If there is ever a way to go through something like this, this is it! I am never in want of anything for long before someone fulfills it. There is power in all the prayers we are receiving, and the peace and strength God has given us through these last 11 days has been unbelievable. Keep praying for Drew, for Molly, and for us! It is working!!
Here's Drew ready for bed tonight! Let's hope we all get a good night's rest!
~Heidi
Molly is back with us now, which was such a great reunion. Drew seemed calmer when she came back, and seemed to be back to his usual, watching the show that is Molly! We can tell she's been out of routine for over a week, and the next challenging front will be to transition to our new normal. And that starts this week. Josh is going to go back to work for at least half days since Drew is fairly stable and Chemo is over for this cycle. We have relatives from Kansas City that have come to stay at the house with Molly during the mornings while Josh is at work to take care of her. I am here at the hospital with Drew then for now, and we'll see where the week takes us. We all can shift around as the week goes on, as we see how Drew is. And how the weather turns out! Drew and I might enjoy watching it snow this week!
I also must share how grateful we are for all the support we have recieved. From our community, from our family and friends, from strangers! I had someone buy my coffee today on my way out of town that had been following us and praying for us, and I had no idea who she was. After we talked, the clerk even said, "hey, the 20 month old boy? I know you too and been reading your updates!" So thank you to them if they are reading this! If there is ever a way to go through something like this, this is it! I am never in want of anything for long before someone fulfills it. There is power in all the prayers we are receiving, and the peace and strength God has given us through these last 11 days has been unbelievable. Keep praying for Drew, for Molly, and for us! It is working!!
Here's Drew ready for bed tonight! Let's hope we all get a good night's rest!
~Heidi
2-2-16
I wanted to update everyone that the MRI results came back late yesterday afternoon, and there was NO cancer or tumors found on the brain! Great news. However (seems like there is always something), there saw some infection, and associated blood clot, behind his ear. They ordered another CT scan last night to be done to take a better look at it. After viewing that, the team has decided to treat with antibiotics, and see how well it responds. They will do another CT scan on Thursday to reassess. If the infection or clot has gotten worse, they will give a blood thinner to treat the clot then. Since his blood counts are already really low from the Chemo, they don't want to do the blood thinner if they don't have to, and risk bleeding. Right now the doctors are telling me that this is something we are watching, and treating, that it is not too alarming yet. I ask all my praying friends and family to pray that it stays this way! That the infection and clot look better on Thurs and no further treatment is needed. I know it is a God thing that they even found this infection--it had nothing to do with the MRI and it wasn't present on last week's CT scan. So they didn't find what they were looking for on the MRI, but found this instead, and now we are treating it.
Drew continues to look, and starting to act, better. Nurses who saw us last week keep commenting on how much better he looks. He has thrown up a couple times in the last few days, but pretty isolated incidents. In general I can see that my boy is already getting better. He (and I) are getting really tired, hopefully we get some restful days soon. They are telling us to expect to be here until the first part of next week at least--depending on how this infection/blood clot turns out. Drew and I both are starting to get used to hospital living I'm afraid.
Josh going back to work this week has gone well, and Molly is enjoying all the extra attention she's getting from my relatives. I am grateful to have such a great family, my Uncle came to Rochester before the snow really started today, which allowed me to get a break-and a nap! We are blessed to have gotten a room at the Ronald McDonald House, so I even have had a place to escape to. It's just a block from the hospital, and has worked well so far.
After his bath tonight Drew was pretty alert and was back to exploring all the buttons on his bed. He thought the nurse call/TV speaker was a phone! So here he is playing telephone.
Don't stop the praying for us, thank you all again!
~Heidi
Drew continues to look, and starting to act, better. Nurses who saw us last week keep commenting on how much better he looks. He has thrown up a couple times in the last few days, but pretty isolated incidents. In general I can see that my boy is already getting better. He (and I) are getting really tired, hopefully we get some restful days soon. They are telling us to expect to be here until the first part of next week at least--depending on how this infection/blood clot turns out. Drew and I both are starting to get used to hospital living I'm afraid.
Josh going back to work this week has gone well, and Molly is enjoying all the extra attention she's getting from my relatives. I am grateful to have such a great family, my Uncle came to Rochester before the snow really started today, which allowed me to get a break-and a nap! We are blessed to have gotten a room at the Ronald McDonald House, so I even have had a place to escape to. It's just a block from the hospital, and has worked well so far.
After his bath tonight Drew was pretty alert and was back to exploring all the buttons on his bed. He thought the nurse call/TV speaker was a phone! So here he is playing telephone.
Don't stop the praying for us, thank you all again!
~Heidi
2-5-16
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 morning they said that if we stay on track this weekend, our target to be released from the hospital on Monday is a real possibility! Another piece of great news! So things we need to accomplish to get home is continuing to be fever/blood infection free, and that he can be eating on his own. He already is starting to want to eat, so we will work to encourage that! Physical Therapy has started too--the therapist had him walking around this afternoon and it was great to see! She said each day laying in bed takes 4 days to gain back that muscle loss--so at day 16 he is pretty weak! We'd appreciate prayers that he can gain a sufficient appetite and keep it down, and that he can gain strength this weekend as we continue to stay infection free.
On the home front, Josh worked this whole week with help from my wonderful relatives Mark and Pam being at our home with Molly. She had a great week having tons of fun with them and experiencing the snow storm! We are working on a long term plan for her--which may include Preschool/Daycare in town. We think it really would give her some stability during these hospitalizations, and also put less pressure on friends and family for her care during those times as well. I think she'll do great, but it's hard for me to accept that I can't be there with her all the time like I used to.
The next cycle of chemo is scheduled to begin on Tuesday, Feb 16th. which will be just like this last round, with a 5 day hospital stay at least while they administer the chemotherapy. We just hope that we get to go home a lot sooner following the last dose then we did this time! They reiterated that they wanted to monitor him more since the first round is so hard on his body, so we have hope that an almost 3 week hospital stay should be one of our longer ones!
Thank you, thank you again for the prayers for this scan and for us in general! They are working! God is showing us His faithfulness even amidst this awful trial!
~Heidi
On the home front, Josh worked this whole week with help from my wonderful relatives Mark and Pam being at our home with Molly. She had a great week having tons of fun with them and experiencing the snow storm! We are working on a long term plan for her--which may include Preschool/Daycare in town. We think it really would give her some stability during these hospitalizations, and also put less pressure on friends and family for her care during those times as well. I think she'll do great, but it's hard for me to accept that I can't be there with her all the time like I used to.
The next cycle of chemo is scheduled to begin on Tuesday, Feb 16th. which will be just like this last round, with a 5 day hospital stay at least while they administer the chemotherapy. We just hope that we get to go home a lot sooner following the last dose then we did this time! They reiterated that they wanted to monitor him more since the first round is so hard on his body, so we have hope that an almost 3 week hospital stay should be one of our longer ones!
Thank you, thank you again for the prayers for this scan and for us in general! They are working! God is showing us His faithfulness even amidst this awful trial!
~Heidi
2-10-16
I've been waiting to update everyone hoping to say that we are home, but that's not the case just yet. Drew is making great progress on his feeds, and today will finally be at the goal! He has been taking 2 steps forward, one step back on them it seems since last weekend. They'd up it to the next incriment and his stomach would get upset, and we'd bump it back down and give him a break, then try it again later. So today we'll set it at the 40 ml/hr of formula that they want us to be at and hope he can hold it down. Yesterday, however, we had another issue the doctors were concerned about. I guess Drew's red blood count, his Hemoglobin numbers, have been climbing since the weekend. And climbing, and climbing. He was at 17.5, a number that was as low as 5.2 last week, and which the normal is about 13. His bone marrow apparently is now over producing red blood cells, and apparently, they've never seen this! The lead doctor on our team says she has never seen this in a nueroblastoma stage 4 case. They actually took blood off of him the last 2 days! She used the word bizarre about 3 times in our conversation. Their best guess is that the bone marrow is recovering, maybe from the cancer already being killed of, maybe from the Chemo effects wearing off, and recovering with gusto! It wouldn't be such a bad issue, if it wasn't for that blood clot in his head, remember from last week? They were worried this "thick" blood might move that around. So back down to CT scan we went. And the results--showed the clot is resolving! The infection there looks stable as well. So that concern is diminished for now. They are still giving him blood thinners while his red count is so high, and taking off blood as needed. Funny they are throwing away his blood now, and last week had several blood transfusions! They are continuing to monitor the numbers, and watch to see if Drew's bone marrow will calm down and get back to a normal production level. That will be another thing they want to see before they release us, a more normal count of 14 something.
It's been situations like this blood issue that I am reminded God is watching out for us. Had his feedings gone better and we were home--I'd have had no idea this was going on. But we are here, and the best doctors are working on him. I should have known that when our prayers aren't immediately answered, there are reasons. And Drew is doing SO much better overall. Every nurse is just amazed at how happy and funny he is. He's really turned on his charm again. And it's so refreshing, we really haven't seen THIS Drew since before Christmas. He was so sick at home and we didn't know why for weeks, and then we've been here and he's been sick, it's great to finally have our smiling little boy back!
Hopefully our NEXT update will report we are home, but if not, I have peace knowing God knows best. Take care all! Here he is with the Valentines that Molly made him at her class this week!
~Heidi
It's been situations like this blood issue that I am reminded God is watching out for us. Had his feedings gone better and we were home--I'd have had no idea this was going on. But we are here, and the best doctors are working on him. I should have known that when our prayers aren't immediately answered, there are reasons. And Drew is doing SO much better overall. Every nurse is just amazed at how happy and funny he is. He's really turned on his charm again. And it's so refreshing, we really haven't seen THIS Drew since before Christmas. He was so sick at home and we didn't know why for weeks, and then we've been here and he's been sick, it's great to finally have our smiling little boy back!
Hopefully our NEXT update will report we are home, but if not, I have peace knowing God knows best. Take care all! Here he is with the Valentines that Molly made him at her class this week!
~Heidi
2-12-16
Well, we are HOME! Wednesday night we held our breath as the blood was drawn, and waited to hear what the red count would be. His feedings were at where they wanted them, so it was just his Hemoglobin number that was keeping us in the hospital. We wanted to see a number less then 16 to get us home before the weekend. And when it came back, it was 15.9! They took blood again in the morning, and 15.2 was the number then. That was enough to show a downward trend, and in the acceptable range. So the process was started to go home yesterday, Thursday. By the time we left from going over the discharge papers, and with all our equipment, prescriptions, and supplies, it was right at 3:00. I picked Molly up on my way into town, and the Becker Family had our first dinner at home together since January 19th. It was wonderful. Bedtime was nice too--but Drew's gotten real used to sleeping right beside someone in the last 3 weeks, so he wasn't too happy about being in his room alone. But he really didn't put up too much of a fuss, and once he was asleep he was only up twice in over 13 hours! He could use some catching up too I guess!
Today Josh went to work, and I began the day with my two kids--familiar, yet in some ways totally new. But we have managed, even went to HyVee to pick up some dry cleaning! A friend of mine also graciously came by and gave Drew a buzz--his hair was beginning to fall out. I decided it would be easier for me to just have it cut and not watch it shed over the next week. I think he looks pretty cute, but I'm probably partial ;) So here's his new 'do! Molly got a cut as well, she needed a trim! They both were enjoying a cheese block snack...
On Tuesday we report bright and early at 8:15AM for Round 2! Molly will start her Preschool/Daycare as well that day. My dad will be coming up to help out as needed.
Hopefully we will have nothing to report over the weekend, accept a nice Valentines Day together. The love that has been shown to us so far has been so wonderful. I have that to be thankful for this Valentines, as well as obviously my cutest little Valentine! Have a wonderful Valentine weekend!
~Heidi
Today Josh went to work, and I began the day with my two kids--familiar, yet in some ways totally new. But we have managed, even went to HyVee to pick up some dry cleaning! A friend of mine also graciously came by and gave Drew a buzz--his hair was beginning to fall out. I decided it would be easier for me to just have it cut and not watch it shed over the next week. I think he looks pretty cute, but I'm probably partial ;) So here's his new 'do! Molly got a cut as well, she needed a trim! They both were enjoying a cheese block snack...
On Tuesday we report bright and early at 8:15AM for Round 2! Molly will start her Preschool/Daycare as well that day. My dad will be coming up to help out as needed.
Hopefully we will have nothing to report over the weekend, accept a nice Valentines Day together. The love that has been shown to us so far has been so wonderful. I have that to be thankful for this Valentines, as well as obviously my cutest little Valentine! Have a wonderful Valentine weekend!
~Heidi
2-17-16
Another round begins, time for another update! Fortunately, this time there isn't much to report! We had an absolutely wonderful 4 days at home together. We all caught up on sleep (Drew slept over 13 hours one night, with only a couple times up to make sure we were there!), as well as errands and tasks around the house. Drew was in such a good mood, it was great to have our happy boy back! The last time he was at home he was such a mess, so it gives us piece of mind to know he is already getting better.
Josh and I took Drew in yesterday then, to start round 2. Once we got all the pre-admittance things done and got into his room it was almost noon. My dad made his way to Rochester from Iowa and met us in Drew's room in the afternoon. This round we decided to have him stay with Drew in the hospital, with visits from either Josh or I during the day, and have me home with Molly during the week. When we left they were about to start the Chemo, which really is just another bag on his IV pole dripping. He's gotten sick a couple times already, so they started giving an anti nausea medicine and he hasn't had an issue since. Josh just came home from being with him this afternoon saying he's actually almost hyper! What a change, the last round we started out so sick that he just laid there. This time the challenge is to keep him IN bed! And his talking has really exploded. Maybe we underestimated him--he might not be as quiet as we thought, it just took him longer to get started! Again, it's refreshing to see him being a normal little outgoing boy. On the Drew front you could pray that his attitude continues to be sunny. That we can keep the sickness part of Chemo under control and that the Chemo itself keeps working! Pray that no unexpected issues arise. If no complications arise we could take him back home as early as this weekend!
Yesterday wasn't just a big day for Drew, but also for Molly! She had her first day of PreK! She had a great day and already came home telling stories about her new friends! I'm seeing that it is really just as important to be here with her as with Drew in the hospital. Our new daycare/preschool set up will be great for her to get that structure back in her day when I'm not here--and when I am it's good for me to be with her if possible. You can also continue to pray that she can transition to our new normal smoothly-she's beginning to act out a bit with some extra clingy-ness and separation anxiety. School has left her pretty tired by the end of the day, so some of it will just be her adjusting to her new schedule, but I know that some is due to all that is going on around her.
Thank you all again for your thoughts and prayers!
~Heidi
Josh and I took Drew in yesterday then, to start round 2. Once we got all the pre-admittance things done and got into his room it was almost noon. My dad made his way to Rochester from Iowa and met us in Drew's room in the afternoon. This round we decided to have him stay with Drew in the hospital, with visits from either Josh or I during the day, and have me home with Molly during the week. When we left they were about to start the Chemo, which really is just another bag on his IV pole dripping. He's gotten sick a couple times already, so they started giving an anti nausea medicine and he hasn't had an issue since. Josh just came home from being with him this afternoon saying he's actually almost hyper! What a change, the last round we started out so sick that he just laid there. This time the challenge is to keep him IN bed! And his talking has really exploded. Maybe we underestimated him--he might not be as quiet as we thought, it just took him longer to get started! Again, it's refreshing to see him being a normal little outgoing boy. On the Drew front you could pray that his attitude continues to be sunny. That we can keep the sickness part of Chemo under control and that the Chemo itself keeps working! Pray that no unexpected issues arise. If no complications arise we could take him back home as early as this weekend!
Yesterday wasn't just a big day for Drew, but also for Molly! She had her first day of PreK! She had a great day and already came home telling stories about her new friends! I'm seeing that it is really just as important to be here with her as with Drew in the hospital. Our new daycare/preschool set up will be great for her to get that structure back in her day when I'm not here--and when I am it's good for me to be with her if possible. You can also continue to pray that she can transition to our new normal smoothly-she's beginning to act out a bit with some extra clingy-ness and separation anxiety. School has left her pretty tired by the end of the day, so some of it will just be her adjusting to her new schedule, but I know that some is due to all that is going on around her.
Thank you all again for your thoughts and prayers!
~Heidi
2-20-16
One month ago today we took Drew to the emergency room in Austin, beginning this whole journey. In some many ways we are much better off then we were a month ago, and in other ways I look back and wish to be back in our "normal" world again. But each day forward is another day closer to being healed. This journey has already been, and will be filled with ups and downs, but we have faith that its an overall upward trajectory. I've been likening it to the stock market--in the course of an hour or even a day it can be hard to see the trend line between all the highs and lows, but over the year the trend is almost always up!
This week has been one of the "lows". This round of Chemo has caused Drew to get sick a lot. The nurses and doctors are figuring out what will keep his getting sick to a minimum. Cutting off the feeds for now has helps a lot. Trying different anti-nausea medications in different forms/amounts is where we are now. My dad (Heidi's) so graciously was with him the first few days in the hospital overnight and quite literally caught the brunt of the sickness. Since yesterday I've been here and he has gotten sick some, but it is improving. They just changed us to a new medication for nausea, we'll see if that helps even more, pray it does! With one more dose of Chemo tonight, we know that the end is in sight either way. They expect to keep us until he can hold down the feedings again though, which may not be so bad. It's easier to deal with the mess with help from the nurses! Pray that that process doesn't take as long as the last time!
The big picture though has been unchanged--no new complications that are of concern. Praise the Lord and pray that continues to be the case! Everyone is anxious to see if his red count soars again once his body starts to recover. They still don't know what to expect with him! Next on our flow chart of treatment is a re-check of the bone marrow before round 3 begins. It will be a surgery again, and we'll just be admitted early for our scheduled Chemo round to have that done. We can already start praying that this test shows progress--even total healing--of the bone marrow (which I'm told is possible!).
Drew really has kept a pretty good attitude through even through this sickness-ridden round. He'll be smiling and playing around, then get sick, and as soon as he's cleaned up again, right back at what he was doing. This continues to show us that overall he is making great progress. The trick now is keeping him in bed, as you can see from my pictures!
As always thank you again for the encouraging words, thoughts, and prayers. One month down! :)
~Heidi
This week has been one of the "lows". This round of Chemo has caused Drew to get sick a lot. The nurses and doctors are figuring out what will keep his getting sick to a minimum. Cutting off the feeds for now has helps a lot. Trying different anti-nausea medications in different forms/amounts is where we are now. My dad (Heidi's) so graciously was with him the first few days in the hospital overnight and quite literally caught the brunt of the sickness. Since yesterday I've been here and he has gotten sick some, but it is improving. They just changed us to a new medication for nausea, we'll see if that helps even more, pray it does! With one more dose of Chemo tonight, we know that the end is in sight either way. They expect to keep us until he can hold down the feedings again though, which may not be so bad. It's easier to deal with the mess with help from the nurses! Pray that that process doesn't take as long as the last time!
The big picture though has been unchanged--no new complications that are of concern. Praise the Lord and pray that continues to be the case! Everyone is anxious to see if his red count soars again once his body starts to recover. They still don't know what to expect with him! Next on our flow chart of treatment is a re-check of the bone marrow before round 3 begins. It will be a surgery again, and we'll just be admitted early for our scheduled Chemo round to have that done. We can already start praying that this test shows progress--even total healing--of the bone marrow (which I'm told is possible!).
Drew really has kept a pretty good attitude through even through this sickness-ridden round. He'll be smiling and playing around, then get sick, and as soon as he's cleaned up again, right back at what he was doing. This continues to show us that overall he is making great progress. The trick now is keeping him in bed, as you can see from my pictures!
As always thank you again for the encouraging words, thoughts, and prayers. One month down! :)
~Heidi
2-22-16
Well another Monday at St Mary's. Drew continues to be getting sick frequently enough that they aren't sending us home. And today his belly felt a little harder, and a bit more bloated. An xray was ordered. The results of that have come back, and they want further imaging. They think he either has a blockage in his bowels, or a condition commonly seen with Chemo where the bowels slow down and need some nudging to get going again. Treatment would vary based what the problem is. They say this probably has a lot to do with the frequency of his vomiting--it doesn't have anywhere to go but up! So I will go down with him to ultrasound sometime this evening, and hopefully that will give them the information they need. If not, another CT scan could be in our future. He really is acting more down today then he has this whole stay. Not wanting to do much but lay in bed and watch TV--NOT what we are used to from Drewster! Pray that the doctors find what is holding his system up, and it is an issue that is easy to resolve! Once again, we continue to trust that God has us right where we are suppose to be, and trying to remember that He is in control at all times.
In contrast to today, Drew was in such good spirits this weekend! Waving and smiling at everyone he passed by in the halls, and who walked by his door. Sunday afternoon a mother and her son came up to us and told of how Drew's waves and smiles really touched her son, and while they were out that day he wanted to bring Drew back a toy to make him feel better. You could tell the boy was such a caring guy, and it was nice to see the kindness of a child. The mother and I talked and really enjoyed having someone who could relate to hospital life with kids! This boy and Drew both have talked about each other and been excited to "play" together in the play room. This is him and Drew today, before the boy's sister was discharged. We hope to stay in touch with this sweet family!
Since my Dad went home on Friday, today was our first day managing a hospital stay by ourselves. Josh was able to go into work a little later, and dropped Molly off at Daycare when it opened. She stayed there in the morning and went to her preschool class in the afternoon before Josh picked her up. She had a great day, and although Josh says you can tell she's tired--she enjoyed her first full day of daycare! So nice that the school got us in so this can be an option!
I can never end an update without expressing our gratitude for your continued prayers. Thank you!
~Heidi
In contrast to today, Drew was in such good spirits this weekend! Waving and smiling at everyone he passed by in the halls, and who walked by his door. Sunday afternoon a mother and her son came up to us and told of how Drew's waves and smiles really touched her son, and while they were out that day he wanted to bring Drew back a toy to make him feel better. You could tell the boy was such a caring guy, and it was nice to see the kindness of a child. The mother and I talked and really enjoyed having someone who could relate to hospital life with kids! This boy and Drew both have talked about each other and been excited to "play" together in the play room. This is him and Drew today, before the boy's sister was discharged. We hope to stay in touch with this sweet family!
Since my Dad went home on Friday, today was our first day managing a hospital stay by ourselves. Josh was able to go into work a little later, and dropped Molly off at Daycare when it opened. She stayed there in the morning and went to her preschool class in the afternoon before Josh picked her up. She had a great day, and although Josh says you can tell she's tired--she enjoyed her first full day of daycare! So nice that the school got us in so this can be an option!
I can never end an update without expressing our gratitude for your continued prayers. Thank you!
~Heidi
2-23-16
I'll pick up where we left off last night! We went down for the ultrasound about 6. They found what they call a hematoma, a pocket of blood like a bruise, in the area around his small intestine, along with a lot of backed waste. The ultrasound wasn't clear enough to exactly identify where the hemotoma was (inside or outside the intestine wall), and whether it was actually blocking the movement of his intestines. The surgery team was going to want a CT scan to get that answer, probably the next day if he didn't get worse. So we came back to the room and made some adjustments in the mean time. Took out the feeding tube and put in a suction tube that basically vacuums out his stomach intermittently, and stopped the solid feeds to switch him to IV nourishment--both in an effort to give his digestive system a break. And finally he seemed to be comfortable! He slept all night, first time in a long time, and hasn't had any more vomiting! We went down for the CT scan late morning, and by afternoon, the doctors came in and reported that the CT had showed the hemotama inside the small intestine, and probably was the source of a blockage for a while. But it appears to be diminishing-not bleeding anymore and getting smaller. There IS flow around it again, but a pretty thin path. So they think that in a week's time the body should resolve the issue. For a while they will stick with the IV nourishment instead of solid feedings. All this means that we will likely be in the hospital the rest of the week while they watch this and wait for it to heal. He has already had a few bowl movements today, so his system seems to already be improving. Thank you for all the prayers since yesterday--as you can see they were answered as they could clearly identify what was going on, and that it looks like it will resolve itself! Continue to pray that all goes according to plan, and we can put this bump-in-the-road behind us.
Drew has clearly felt much better today. It's great to see his smile and energy back! But with a 6 foot tube attaching him to the wall for the suction of his belly, it has been challenging to keep him contained and entertained! We've found the window that we can watch the traffic and people crossing the street. He stands and waves at people below, as you can see! He continues to be so cooperative and easy to work with during all these tests and exams, making all this SO much easier to handle. I thank God for my little Drewy each day!
Until next time!
~Heidi
Drew has clearly felt much better today. It's great to see his smile and energy back! But with a 6 foot tube attaching him to the wall for the suction of his belly, it has been challenging to keep him contained and entertained! We've found the window that we can watch the traffic and people crossing the street. He stands and waves at people below, as you can see! He continues to be so cooperative and easy to work with during all these tests and exams, making all this SO much easier to handle. I thank God for my little Drewy each day!
Until next time!
~Heidi
2-25-16
To update everyone--yesterday was a good day! He was in a good mood, and we got to take him off the suction tube! He was happy to be free to walk around. I asked for some pain meds for him since he seemed still uncomfortable at times and irritated, which helped him out a lot. We all were optimistic that his healing was going quickly, and it was decided to take him off the suction indefinitely! We went to bed thinking we may even start feeds today and be on our way out of here for this round.
BUT then over night, he got uncomfortable again, even after more pain meds. He also got sick again twice. An Xray was ordered and while it doesn't look as backed up as it was before, there was still some extra gas building up in his belly. Then he developed a fever. It was a busy night for us! In the morning it was decided that maybe we too eagerly took the suction tube out. His digestive tract is healing, we are seeing (and hearing!) movement, but the obstruction is still causing things to get behind in his stomach, causing him to get sick. We will be putting the tube back in today and anticipate he'll be much more comfortable. The feeds through the feeding tube will not be started today, or probably tomorrow. We'll just have to give his system more time to heal. We will also keep up with the pain medicines. They explain that this hematoma is similar to a bruise, and bruises hurt when pressure is put on them, right? So it is probably painful as waste and gas pass by it in the small intestine. That makes sense to me. The fever has been ruled as coincidental. A "typical" fever associated with low blood counts following chemo, and a possible sign of infection. He was started on antibiotics right away and blood cultures were taken to show if an infection is present. Him and I both are pretty tired today after all this. Please pray that there is no infection, and the fever goes away as quickly as it came. Also that the blockage issue continues to resolve and we can keep him comfortable during the process. And that he (and I) can get some rest! Josh will be coming to take over on this end today, and I'll go back to Austin to rest and spend time with Molly.
~Heidi
BUT then over night, he got uncomfortable again, even after more pain meds. He also got sick again twice. An Xray was ordered and while it doesn't look as backed up as it was before, there was still some extra gas building up in his belly. Then he developed a fever. It was a busy night for us! In the morning it was decided that maybe we too eagerly took the suction tube out. His digestive tract is healing, we are seeing (and hearing!) movement, but the obstruction is still causing things to get behind in his stomach, causing him to get sick. We will be putting the tube back in today and anticipate he'll be much more comfortable. The feeds through the feeding tube will not be started today, or probably tomorrow. We'll just have to give his system more time to heal. We will also keep up with the pain medicines. They explain that this hematoma is similar to a bruise, and bruises hurt when pressure is put on them, right? So it is probably painful as waste and gas pass by it in the small intestine. That makes sense to me. The fever has been ruled as coincidental. A "typical" fever associated with low blood counts following chemo, and a possible sign of infection. He was started on antibiotics right away and blood cultures were taken to show if an infection is present. Him and I both are pretty tired today after all this. Please pray that there is no infection, and the fever goes away as quickly as it came. Also that the blockage issue continues to resolve and we can keep him comfortable during the process. And that he (and I) can get some rest! Josh will be coming to take over on this end today, and I'll go back to Austin to rest and spend time with Molly.
~Heidi
2-29-16
Happy Leap Day everyone! Our story here hasn't changed too much over the weekend. Josh took over on Friday and played the entertain-an-almost-two-year-old-in-bed game. And I got to spend some time with Molly, and catch up on as much as I could at the house. Josh's parents came up to visit on Saturday, so it was nice to see them with the kids. Drew does still seem really uncomfortable and in pain at times. A dose of Tylenol does wonders for him. At one point over the weekend, Josh asked if there could be anything else going on, or if the obstruction could be getting worse? They did an Xray and all looks good--no new issues and the hematoma is not any bigger. So that is good news! It still leaves us with a very slow healing obstruction. So we are just waiting, and working on our patients. His fever has been pretty constant all weekend as well. So far the cultures have still come back clear, so we don't think he has an infection as of now. Apparently some will just run fevers when they get to a certain point in the chemo cycles, something that brings you back to the hospital to be monitored and put on preemptive antibiotics. So I guess if it wasn't for the bowel obstruction, we'd have been here for the fever anyway!
Trying to stay positive and not get too frustrated by these unanticipated issues. I can see how easy it is to get upset that things don't seem to ever go right, but I try to bring myself back to all the things God has taught me so far. His way is better then mine, even if I don't understand it. He is in control and will take care of us like he always has. And that I need to find ways to be thankful each day--to live with an attitude of thankfulness because there is so much to be thankful for! Like a bonus day of the year I get to spend with my Drew--even if it's in the hospital!
~Heidi
Trying to stay positive and not get too frustrated by these unanticipated issues. I can see how easy it is to get upset that things don't seem to ever go right, but I try to bring myself back to all the things God has taught me so far. His way is better then mine, even if I don't understand it. He is in control and will take care of us like he always has. And that I need to find ways to be thankful each day--to live with an attitude of thankfulness because there is so much to be thankful for! Like a bonus day of the year I get to spend with my Drew--even if it's in the hospital!
~Heidi
3-3-16
Molly and Josh are continuing to find their routine at home as well. It's the second week now that I've been with Drew at the hospital, and Josh has been manning the home front--dropping Molly off at Daycare/Preschool while he's at work. He's really doing a great job being Super Dad--helping Molly pick out her clothes for the next day, packing her lunch, making dinner, and everything else! We each say we aren't sure which one of us has the harder time, it goes back and forth each day!
I continue to be SO blown away by the kindness of others shown to us. The more I talk with other families on the floor, I can see how very fortunate we are. Friends delivering Shamrock Shakes, taking me out to coffee or dinner, and even dropping their lives to come and help out! This coming week a fellow Mom of mine who was formerly in Austin, now in New Orleans, is graciously leaving her two kids and husband for the week to come and help out at my home. I am very grateful and humbled to have friends that are willing to do such a thing for me. God is truly showing me His love through the care and kindness of others. I am even more inspired to pass this wonderful gift of His love on to others as much as I can, whenever I can.
I'll let everyone know the results of the bone marrow biopsy as soon as I get it! Here's Molly showing Drew how to work the kid's computer in the playroom today!
~Heidi
3-4-16
Finally the results are back! The bone marrow biopsy showed NO detectable neuroblastoma!! They also had collected a urine sample to test for a certain bi-product of the tumor that was present at diagnosis, and found no trace of it today!! Which means the tumor is small enough now to not be secreating enough to detect. Which supports what the last CT scan showed a week ago--the tumor has shrunk after 2 cycles of Chemo to half of the original size. 13cm across on one measurement, down to 7cm! Overall a wonderful report...praise God! We press on with the same treatment plan, with renewed hope and enthusiasm that we are making real progress!
On the bowel obstruction front, we are off the suction and going to start at "trickle" of formula feeds today to see how it goes. We'll take it slow this weekend and see how it goes. But there is progress there as well! They will asses with an ultrasound on Monday and decide whether or not to start Round 3 on Tuesday. But he continues to act like he is much more comfortable, in a great mood. Telling the nurses he loves them and blowing them kisses. Turn it down a notch Drew! ;)
Have a wonderful weekend!!
Psalm 138:5 Yes, they shall sing of the ways of the Lord and joyfully celebrate His mighty acts, for great is the glory of the Lord.
~Heidi
On the bowel obstruction front, we are off the suction and going to start at "trickle" of formula feeds today to see how it goes. We'll take it slow this weekend and see how it goes. But there is progress there as well! They will asses with an ultrasound on Monday and decide whether or not to start Round 3 on Tuesday. But he continues to act like he is much more comfortable, in a great mood. Telling the nurses he loves them and blowing them kisses. Turn it down a notch Drew! ;)
Have a wonderful weekend!!
Psalm 138:5 Yes, they shall sing of the ways of the Lord and joyfully celebrate His mighty acts, for great is the glory of the Lord.
~Heidi
3-8-16
Yesterday's ultrasound look great! The report says that there is not blockage anymore, the intestine wall where it was is now just "thick", indicating the plan to just let the body re-absorb the blood making up the hematoma worked! As the weekend went on, we could tell it was healing as well. He didn't need any Tylenol anymore, and his dirty diapers were a lot more solid. One more issue resolved! So on to Round 3! But wait, not today as planned. The stem cell collection that is scheduled for in between this cycle and next apparently was going to fall over the weekend if we started today, so we are pushed back to Thursday now for the start of chemo. Pretty disappointing to have to wait, when nothing physically is holding us up. But after talking with the doctors and understanding all that goes into this collection, I can see why it is so important to get the timing right. I guess I should be happy that we are not being delayed because of complications or things going wrong, but it doesn't make waiting around with an energetic almost 2 year old boy any easier! So we wait. And work on the virtue of patience...so you can pray that we chose to have a good attitude about the delay, that this cycle can go well when it begins, and looking ahead that the stem cell collection process, that it goes well also.
On the home front, it all came together yesterday to pick up my friend who is staying at our house this week. A different friend took time out of her day to stay with Drew so I could go up to St Paul and pick Michelle up, who went to Austin from the hospital and got right to work making a real dinner for Josh and Molly! I'm sure Josh will enjoy the help at home, and Molly will benefit from not being dropped off at 6:30AM for the day this week! Being with Molly this weekend, I could see that these long hospital stays are really starting to catch up to her. My family came up on Saturday and watched the kids so Josh and I could have an afternoon together, which was great, but left Molly asking where we were all Saturday and who was going to put her to bed. Its so unfair to her, to all of us!, what is going on. But we are doing the best we can and relying on God to bring us wisdom, comfort and peace. Please pray He will give those to Molly as well!
Here's how we spend MANY hours--pushing around the halls of the hospital! Drew has such a following whenever he "drives" by, everyone stops and waves to him! And he waves back with a big smile on his face--almost like he's in a parade! :)
Thank you all for your encouragement and prayers, as always!
~Heidi
On the home front, it all came together yesterday to pick up my friend who is staying at our house this week. A different friend took time out of her day to stay with Drew so I could go up to St Paul and pick Michelle up, who went to Austin from the hospital and got right to work making a real dinner for Josh and Molly! I'm sure Josh will enjoy the help at home, and Molly will benefit from not being dropped off at 6:30AM for the day this week! Being with Molly this weekend, I could see that these long hospital stays are really starting to catch up to her. My family came up on Saturday and watched the kids so Josh and I could have an afternoon together, which was great, but left Molly asking where we were all Saturday and who was going to put her to bed. Its so unfair to her, to all of us!, what is going on. But we are doing the best we can and relying on God to bring us wisdom, comfort and peace. Please pray He will give those to Molly as well!
Here's how we spend MANY hours--pushing around the halls of the hospital! Drew has such a following whenever he "drives" by, everyone stops and waves to him! And he waves back with a big smile on his face--almost like he's in a parade! :)
Thank you all for your encouragement and prayers, as always!
~Heidi
3-10-16
Well Chemo day has finally come! We started the Chemo drip about 9AM, and this round it runs for 6 hours! Four hours for one bag, two for the 2nd. This set of Chemotherapy drugs apparently is stronger, and causes almost all to get sick from it. We've already started the anti-nausea medications in anticipation and a preemptive effort to keep it under control. Pray they work! And that he can keep his happy-go-lucky spirit a best he can, and I/Josh can have strength and patience through this round. Sounds like *if* all goes well, we'll be looking at Monday as a possible release date. Which would be 28 days since we checked in last month! Pray that that really happens and our whole family can get a break from being separated!
Yesterday Michelle brought Molly over in the morning since she didn't have preschool, and we had a great day! I had lined up a nurse assistant to watch Drew and us girls went to lunch, and did some shopping at the mall. Then after we got back and I got Drew down for his nap, Michelle left and I had both kids here with me until Josh came after work! So over 4 hours by myself with them! Which may not sound like a great feat, but I haven't had them both alone for weeks, let alone with one have 4 different tubes attached to an IV poll to keep track of while they run around! It went well, and when Josh was here we all went down for supper at the cafeteria--the 4 of us together! It was wonderful.
I'll keep you all posted on how this round goes--thanks for you continued prayers! Here's Molly and Drew hanging out yesterday, they had to wear masks when they changed the caps on Drew's line--Drew only kept his on when Molly had one on too!
~Heidi
Yesterday Michelle brought Molly over in the morning since she didn't have preschool, and we had a great day! I had lined up a nurse assistant to watch Drew and us girls went to lunch, and did some shopping at the mall. Then after we got back and I got Drew down for his nap, Michelle left and I had both kids here with me until Josh came after work! So over 4 hours by myself with them! Which may not sound like a great feat, but I haven't had them both alone for weeks, let alone with one have 4 different tubes attached to an IV poll to keep track of while they run around! It went well, and when Josh was here we all went down for supper at the cafeteria--the 4 of us together! It was wonderful.
I'll keep you all posted on how this round goes--thanks for you continued prayers! Here's Molly and Drew hanging out yesterday, they had to wear masks when they changed the caps on Drew's line--Drew only kept his on when Molly had one on too!
~Heidi
3-11-16 and 3/12/16 update
Drew sprung a leak in his central line on Friday morning right before we were going to start day two of Chemo. They tried to repair the line but were not successful. The Surgery team scheduled a surgery on Friday to replace his central line with a new one. Drew went into Surgery about 5 PM and was back to his room by about 8 PM. Everything went well and the new central line is in place and working. Day two of Chemo for this round was delayed by about 14 hours but the doctors said it should not make any difference. So far he is actually doing pretty good during round three, getting sick some but not near as much as last time when he had the obstruction in his digestive track. We are scheduled to do the last two days of round 3 the next two nights and hopefully will be able to bring Drew home on Tuesday for the rest of the week/weekend.
3-12-16
Well it has been a busy last couple of days!! I'll start off from Thursday, after the first dose of Chemo. Drew did really well! We finished up the treatment, and you couldn't tell a difference in his disposition. He got sick once overnight Thursday night--but otherwise slept all night. Friday comes and as the doctors were in our room for Rounds, the nurse tells us there is a problem. His central line was leaking from a crack. The doctor ordered a halt on the day until we consulted with surgery. This line had to be repaired or replaced before we could continue our Chemo treatments this week. My heart sunk....another set back?! Something else going wrong?! Surgery had a busy day, they wouldn't be able to get him in until late in the day. Which was okay medically to have a slight delay in the sequence of Chemo treatments, but it really needed to be done Friday sometime. While we waited for surgery to have room for us, they had to put in a real IV in his vein to keep fluids going. On an almost 2 year old this is kind of a big deal! But Drew, like he seems to always, handled it well. We got it placed, he took a nice 2 hour nap, and had a fun time playing with Molly (who came with Michelle mid-afternoon) before we got wheeled down to pre-op. Josh joined us there after work and was there to take over after he was brought back up. They ended up not being able to repair it, and instead had to replace the whole line. By the time they got back up to the room, had some fluids run, Chemo treatment dose 2 ran from 10:30PM-4:30AM. Josh has been with him today and has reported that its been a pretty routine day. He's been running around, enjoying the outdoor patio we've found, took a hopefully-his-new-normal 2 hour nap, and has only gotten sick once today. Wonderful that he isn't feeling too sick, an answer to direct prayers!! Once again I'm reminded not to get anxious and upset by things as they come up--God is in control, and works all things out for our good. This cycle has 4 days of treatments, we'll have to see how it goes, and whether this delay effects getting home on Monday. Pray it doesn't or that at least we can be packing up first thing Tuesday! And I'll also keep asking for prayers that the stem cell collection process goes well next week, and that no infections occur.
It was so nice to have last night and today with my good friend Michelle. Molly, her and I had a lovely first half of the weekend together. Molly and I dropped her off in St Paul tonight where she'll fly back to New Orleans tomorrow. Thinking ahead for next week IF we do get to be home together, I could use some prayers to not get overwhelmed! With Josh starting his second week on a new job at the Corporate office, it could probably be a little nerve wracking to get back to managing both kids (let alone all the extra care Drew requires now), along with trying to figure out a new schedule! I have great friends here though, that have literally filled my deep freezer with meals--so cooking won't be a stress for a long time! We have so much to be thankful for!
Thank you for your continued prayers!
~Heidi
It was so nice to have last night and today with my good friend Michelle. Molly, her and I had a lovely first half of the weekend together. Molly and I dropped her off in St Paul tonight where she'll fly back to New Orleans tomorrow. Thinking ahead for next week IF we do get to be home together, I could use some prayers to not get overwhelmed! With Josh starting his second week on a new job at the Corporate office, it could probably be a little nerve wracking to get back to managing both kids (let alone all the extra care Drew requires now), along with trying to figure out a new schedule! I have great friends here though, that have literally filled my deep freezer with meals--so cooking won't be a stress for a long time! We have so much to be thankful for!
Thank you for your continued prayers!
~Heidi
3-14-16
God has heard our prayers! I am packing up right now, Drew is having his last nap at the hospital for a little while, and we should be headed home in the next couple of hours! Josh had a busier night Saturday night as far as Drew being sick, but yesterday he had fewer episodes of getting sick, and last night the nurse and I only had to clean up once! This morning he's only been sick once as well, so the doctors say this is good enough to go home! We'll be getting all our medications, feeding tube supplies, and anything else we need for the week before we go. Drew hasn't been home since Feb 16, so we are pretty excited! Looking ahead for the week, we'd appreciate prayers that no fever/infection comes up, and that the stem cell collection goes well and on schedule next Monday. Also that I can hit the ground running at home going back to full-time-mom-of-two and house duties! Just regular life 2 months ago, but how far we are from regular life now...
I'll keep everyone updated, but hopefully we'll have nothing to report until next week!
~Heidi
I'll keep everyone updated, but hopefully we'll have nothing to report until next week!
~Heidi
3-15-16
Well it was a great afternoon/evening at home. Wonderful to see Drew get re-familiar with our home, to have everyone at the dinner table--to just be at the dinner table!-- and all of us in our own beds. Drew unfortunately started to get sick more frequently as the night went on. He hasn't been able to keep anything down today, even his anti-nausea medications. He's been such a puddle of Drew today, it's heartbreaking. He'll ask for water and drink it, but get sick within half and hour. I put a call into our team at Mayo and they have advised he comes in for fluids this afternoon and to be evaluated. They say that this particular Chemo drug has a delayed nausea side effect, so they aren't concerned about what's going on, but want him to be looked at and given some help recovering. So we are packing a bag, just in case we have to stay, and hoping we don't need it. Either way, I know he needs the fluids and relief the medications will provide (they will give the anti-nausea medications to him through his central line instead of orally). Obviously pray that he can power through the effects of this cycle of Chemo, that the Chemo is indeed killing the cancer as we endure, and that if we have to stay at the hospital it'll be short lived. What a roller coaster!
Here's Molly "holding her broder" this morning before she went to school.
~Heidi
Here's Molly "holding her broder" this morning before she went to school.
~Heidi
3-16-16
What a difference a day makes!! Drew is so much better today! Yesterday afternoon we went to St Mary's to receive fluids and IV anti-nausea medications. He got 2 bags of fluids and two medications. The doctors said that basically the anti-nausea meds just got behind, and once it's out of control at home there's not much you can do to correct it. So once we got him back on track, I had a choice of staying or going back home and seeing how he did--risking another trip back. Josh and I decided we might as well take the time away if we could, even if it meant coming back if he would end up needing more fluids. We chose wisely, because the last time he's been sick was in the St Mary's Pharmacy line! We were home by 8:30, and he slept pretty much through the night. I set my phone alarms every 3 hours to make sure we didn't get behind on the medications again. Today now he's kept his meds down, and water. So I started his tube feedings again at half the full volume and that's gone well. He even sampled some of the strawberries and cheese Molly had for a morning snack, and the mac and cheese we had for lunch! We pray that this twice-delayed, late-showing-up-nausea cycle 3 is behind us! Thank you for all the healing prayers and for your encouragement this week. Now I will continue to monitor his temperature this week, and go to several lab appointments before we go in on Monday for the stem cell collection. That process I'm told should take 1-2 days. Then Round 4 is scheduled to begin March 31, the day before Drew's 2nd birthday.
Yesterday it was dark and rainy. Today the sun is out, and although it's windy and colder, it just seems like such a brighter day on all fronts. Obviously the weather is something I notice in life (I am a Meteorologist if you didn't know!), and as Spring is starting to show up I'm reminded how wonderful the change is. How refreshing the fresh air and warm sunshine is. I've asked Josh in years past, aren't you glad we had winter to make this feel SO great by contrast? His answer is always no, he could live without winter. But I don't think Spring would feel quite as awesome if we didn't just come through the cold, dark, long months of winter. I'm thinking of this whole chapter of our life like that. This "winter" that may seem so cold, dark, and long, but that will make the "springtime" when this is all behind feel just amazing. I get glimpses like today of a "normal" life and can't wait for this to be everyday again! God helps us through the tough times, but we can look forward to the reward of our endurance after it is over.
~Heidi
Yesterday it was dark and rainy. Today the sun is out, and although it's windy and colder, it just seems like such a brighter day on all fronts. Obviously the weather is something I notice in life (I am a Meteorologist if you didn't know!), and as Spring is starting to show up I'm reminded how wonderful the change is. How refreshing the fresh air and warm sunshine is. I've asked Josh in years past, aren't you glad we had winter to make this feel SO great by contrast? His answer is always no, he could live without winter. But I don't think Spring would feel quite as awesome if we didn't just come through the cold, dark, long months of winter. I'm thinking of this whole chapter of our life like that. This "winter" that may seem so cold, dark, and long, but that will make the "springtime" when this is all behind feel just amazing. I get glimpses like today of a "normal" life and can't wait for this to be everyday again! God helps us through the tough times, but we can look forward to the reward of our endurance after it is over.
~Heidi
3-19-16
Well thankfully I don't have too much to report! But since I have a minute with Drew napping and Molly playing, I will add an update. Drew's instances of getting sick have greatly decreased since that first day home, but he still has gotten sick about once a day, and once overnight. The doctors say that this is normal for kids going through Chemo--lingering nausea, and foods tasting different to them. And also for Drew in particular since he probably still has a weaker stomach due to that bowel obstruction, He seems a little more down today, wanting to sleep and be held. As long as he doesn't have a fever, the doctor said this is okay. It may be related to his blood numbers going down, I guess you feel pretty crummy when certain counts are low, and they also suspect he may be fighting a virus of some sort, nothing concerning. Pray that a fever doesn't show up! Otherwise, we've been taking him in every morning since Thurs for lab work in Rochester. Apparently a certain number they are watching to time the stem cell collection can't be taken in Austin. But when all you do is drive there, take blood, and come back, you can be home in under 2 hours. Not too bad in order to be home! Right now the numbers aren't coming back up yet--when they'll schedule the stem cell harvest. Where they are at now, they are thinking it may be more like Tuesday or Weds when he'll be ready. So we'll go in for labs until then, and enjoy the time at home. The process itself I'm told will be a 3-4 hour collection where he'll be hooked up to a big machine with a larger catheter they have to place in the port in neck filtering the stem cells from his blood and putting the blood back in. They will do this once, then see how successful they were and decide whether they need to do another collection. It'll be on me to keep him entertained and relatively calm in bed as this goes on--pray that isn't as it difficult as it sounds!
At home, it's been great to have us all together. There is such a peace about everyone in their beds asleep as I fall asleep myself. There has been a huge learning curve for me as I manage Drew's new care needs. One of my first lessons was to be prepared when I leave the house with extra clothes and a towel! All the feed tube tasks, medication ( an injection and all the oral meds through his tube) and his central line care are becoming easier to do on our own. One perk of being in the hospital is that the nurses take care of all this! Having both kids together is great, but also taking some adjusting. Both have been on their own with whoever's watching them for quite a while! Sharing toys and attention for both of them has taken some work. At the same time a brother-sister fight is kind of refreshing! Continue to pray for Molly especially as we can tell she sometimes struggles to cope with all the changes.
Hope everyone is enjoying their weekend! Here's them watching Thomas the Tank Engine this morning!
~Heidi
At home, it's been great to have us all together. There is such a peace about everyone in their beds asleep as I fall asleep myself. There has been a huge learning curve for me as I manage Drew's new care needs. One of my first lessons was to be prepared when I leave the house with extra clothes and a towel! All the feed tube tasks, medication ( an injection and all the oral meds through his tube) and his central line care are becoming easier to do on our own. One perk of being in the hospital is that the nurses take care of all this! Having both kids together is great, but also taking some adjusting. Both have been on their own with whoever's watching them for quite a while! Sharing toys and attention for both of them has taken some work. At the same time a brother-sister fight is kind of refreshing! Continue to pray for Molly especially as we can tell she sometimes struggles to cope with all the changes.
Hope everyone is enjoying their weekend! Here's them watching Thomas the Tank Engine this morning!
~Heidi
3-21-16
Unfortunately we are starting the week at St Mary's. Yesterday after a morning nap Drew woke up with a fever. We took him in to the Austin Emergency Room where they took blood cultures (to look for bacteria signaling an infection), got a preemptive antibiotic and also a bag of fluids. Because his white cell count is still in the healthy range, we were sent home. We had another appointment in Rochester first thing the next morning, so we'd be re-evaluated here. We had a great rest of the day--got things done around the house, had tacos for supper (a family favorite that Drew even ate some of!) and put kids to bed smoothly. Almost as soon as it was quiet we got the call that the cultures had grown bacteria. Drew has an infection. So we grabbed our pre-packed bags, woke him and and I (Heidi) took him to Rochester where we were admitted. They took their own set of blood cultures, and based on Austin's findings started a different antibiotic. This morning now the doctors have come in with more information. The specific bug we have is Klebsiella Pneumonial, which apparently is fairly common. What is very uncommon is the resistance pattern this bacteria showed on a test ran in Austin. I understand it would be extremely rare to have this particular resistant strain show up in Minnesota, in a child like Drew. This would make treating the infection much more complicated. The Infectious Disease doctor is now on our case. The cultures they took last night however, still have not grown any bacteria for them to first confirm the resistance pattern (they are questioning the positive finding), and then 2nd, if it is resistant to antibiotics they'd typically treat with, work with the sample to find an antibiotic that would treat it. So right now he's on 3 different antibiotics, and we are waiting to see what the most recent cultures will grow and what they will show us. All my faithful pray-ers please ask that we just got a false positive, and the bacteria can be treated by traditional means. Or better yet that the cultures never grow here and the infection is already being taken care of with the antibiotics we are currently on! If it is confirmed to be resistant to typical antibiotics, pray that they find one that will work and we can get the infection under control. I am told to expect a 7-10 day stay for this issue based on the antibiotic treatment schedule. The effect of this infection on our treatment plan are yet to be seen. I am told once this infection is under control, they could still do the stem cell harvest this cycle. Starting round 4 of Chemo (scheduled for March 31st), will most likely be delayed.
It was a nice 6 days at home, long enough to get settled back in. Which I think made this turn of events last night so disappointing. Coming back here for what looks to be another weeks-long stay is pretty sad. To know we will be in the hospital for a major holiday, as well as most likely two birthdays (Drew's and mine the first week in April) is gong to test my ability to chose joy and look for the things we have to be thankful for. I know with God's help I can, but today I'm feeling pretty down. Josh now has to play single parent at home on his first full week on his new job on his own. Pray he can focus at work and things go smoothly with Molly at home. We had a couple Easter activities planned this week with friends that Molly was looking forward too. I have amazing friends that are still going to welcome Molly over to do these fun things, but Molly too woke up pretty disappointed to find Drew and I gone. All of the Becker's could use some prayer!
Please lift us up in prayer today, we appreciate it!
~Heidi
It was a nice 6 days at home, long enough to get settled back in. Which I think made this turn of events last night so disappointing. Coming back here for what looks to be another weeks-long stay is pretty sad. To know we will be in the hospital for a major holiday, as well as most likely two birthdays (Drew's and mine the first week in April) is gong to test my ability to chose joy and look for the things we have to be thankful for. I know with God's help I can, but today I'm feeling pretty down. Josh now has to play single parent at home on his first full week on his new job on his own. Pray he can focus at work and things go smoothly with Molly at home. We had a couple Easter activities planned this week with friends that Molly was looking forward too. I have amazing friends that are still going to welcome Molly over to do these fun things, but Molly too woke up pretty disappointed to find Drew and I gone. All of the Becker's could use some prayer!
Please lift us up in prayer today, we appreciate it!
~Heidi
3-14-16 Part 2
Thank you all for your prayers!! God shows us he is faithful!! The doctor came in to tell us that there had been a clerical error, and the resistance pattern of the infection was not in fact the case!!! We still have Klebsiella Pneumonial, but it is not the antibiotic resistant strain!! Praise God! They should be able to treat it with the "normal" antibiotics, and have taken us off 2 of the "heavy gun" antibiotics we were already on. Tomorrow morning they will know more and probably switch us to a different antibiotic. The cultures taken in Rochster still have not grown any bacteria, so it is possible that the infection is already responding well to the antibiotics we've been on. They give them 48 to grow anything before declaring them negative, and two negative cultures clears us of infection. With this development they say we may not have to be hospitalized the full 7-10 days, we could finish some of the treatment at home. How great would it be to be home for Easter after all? I won't get my hopes up, but we can pray ;)
Thank you all for your prayers!! It really is helping Drew!
~Heidi
Thank you all for your prayers!! It really is helping Drew!
~Heidi
3-23-16
Drew continues to look and act healthy. A great sight. We were switched to a more "normal" antibiotic and cultures were not growing. Notice I said "were". Last night about 8PM they knocked on the door--bacteria had grown from the cultures taken yesterday morning. This morning the infectious disease and hematology/oncology team have narrowed the infection down to one lumen of his central line. So now the plan is to treat the line--by filling it with an antibiotic when its not being used, and going back to the stronger antibiotic in general for Drew. They hope this will clear the line and we'll start to see negative cultures by tomorrow. If not, then we may have to replace the line again (remember we just did that 2 weeks ago). Pray we can have success with treating the current line for the infection without having to do the surgery to replace it again! This latest development have caused the doctors to abandon the plan to harvest Drew's stem cells this cycle. The plan is to do it after round 4 now. Which they hope will not be delayed by this infection (scheduled currently for a week from tomorrow). I am told the delay in collection isn't necessarily bad, but after another round of chemo it might take more then one collection to get the number of stem cells they need. Pray that round 4 isn't delayed, and that looking ahead we can get this harvest done next cycle!
We are now expecting to be here through the holiday weekend for sure. I have come to accept that, and am making plans for our family Easter dinner here. I've reserved a conference room and between crockpots and microwaves, along with jello salads, dinner rolls, and deviled eggs coming from Iowa, we should have a pretty delicious family celebration. My family whom we usually celebrate Easter with is planning on bringing my 94 year old Grandma up on Sunday. This year our Easter may be totally different then "usual", but after I thought about it, it would have been far from usual anyway. We don't need to be in any specific place, or eating specific food to make Easter Easter. Celebrating the Death and Resurrection of Jesus can happen wherever you are, and as long as you are with ones you love, it will be perfect.
Until the next update everyone!
~Heidi
We are now expecting to be here through the holiday weekend for sure. I have come to accept that, and am making plans for our family Easter dinner here. I've reserved a conference room and between crockpots and microwaves, along with jello salads, dinner rolls, and deviled eggs coming from Iowa, we should have a pretty delicious family celebration. My family whom we usually celebrate Easter with is planning on bringing my 94 year old Grandma up on Sunday. This year our Easter may be totally different then "usual", but after I thought about it, it would have been far from usual anyway. We don't need to be in any specific place, or eating specific food to make Easter Easter. Celebrating the Death and Resurrection of Jesus can happen wherever you are, and as long as you are with ones you love, it will be perfect.
Until the next update everyone!
~Heidi
3-25-16
Well no news is good news around here! We are 24 hours away from our 2nd culture to be negative for 48 hours--the criteria to officially say this infection has been treated successfully. Since the vast majority of positive cultures grow within the first 24 hours, they are confident enough to start talking about sending us home! The medical supply company is scheduled to come and teach me how to use the pump so we can do the IV antibiotic at home. And the doctor team is going to submit the discharge orders today too, so if all is clear by tomorrow morning, we could really be home by lunchtime! Easter just might be celebrated at home after all! If all continues to go well, they expect to start round 4 of chemo on time next week--we march on! Thank you for your prayer support and encouraging words this week!
Hopefully you have a blessed Easter weekend with your families, celebrating the triumph of Jesus over sin and death. A truth that has brought me more comfort then ever since we've started this crazy journey with Drew. No matter what battles we fight with death ourselves, Jesus has won the war, and we celebrate that this weekend. An old hymn beautifully summarizes this truth:
Because he lives
I can face tomorrow
Because he lives
All fear is gone
Because I know
He holds the future
And life is worth the living
Just because he lives
Here's Drew playing cars with a boy in the playroom this morning!
~Heidi
Hopefully you have a blessed Easter weekend with your families, celebrating the triumph of Jesus over sin and death. A truth that has brought me more comfort then ever since we've started this crazy journey with Drew. No matter what battles we fight with death ourselves, Jesus has won the war, and we celebrate that this weekend. An old hymn beautifully summarizes this truth:
Because he lives
I can face tomorrow
Because he lives
All fear is gone
Because I know
He holds the future
And life is worth the living
Just because he lives
Here's Drew playing cars with a boy in the playroom this morning!
~Heidi
3-28-16
We had a wonderful Easter! Josh brought Drew home just after noon on Saturday. Once again it was great to have everyone under one roof! We all went to church together on Sunday and my family was here for a traditional Easter dinner after. My 94 year old Grandma was able to make it, and loved the time with the kids and all of us together. I think she, and my family, were relieved to see Drew acting like a (fairly) normal, happy little boy. Her and my mom even folded my laundry and did my ironing :) Drew's slept all night the last 2 nights, and hasn't gotten sick since Saturday morning! For those of you that know how nuts I am about my sleep, you know it was a glorious last couple nights! Pray this continues! The IV antibiotics we are doing at home are going well also. Just like all of Drew's care, it took a few times to feel comfortable doing it, but today I was able to do that, and his meds, and his feeding tube stuff this morning by myself! Which is good because Josh will be gone tomorrow and Wednesday traveling for work. It was an okay time for him to be gone since there is a lull in the action. My Aunt from Detroit is coming to help out this week, which we lined up for when he'd be gone as well. We'll have labs drawn tomorrow to make sure his counts are back up enough to start Chemo on Thursday. We pray that they are so we can keep moving forward!
3-30-16
Hello all! We've almost made it through the hump of the week! Drew had blood drawn yesterday, and the platelet number is high enough to go ahead with round 4 of chemo tomorrow. He's continued to catch up on sleep at home, and has enjoyed bugging his sister! :) Today we went to Molly's school and received a check with funds they had raised for Drew! It was so touching see their generosity, to hear the kids pray for Drew at the beginning of the assembly, and also then to see him give "high fives" to the kids as they left. This is just another example of the wonderful support our community has shown us. Such a blessing!
Well if it's been a quiet week so far for Drew, it hasn't been for the rest of us! Monday afternoon I started to have a stomachache, and by supper time I was full blown sick with a stomach bug. By midnight Josh had gotten sick too. It was a really fierce bug, but luckily the worst of it only lasted about 12 hours. Josh ended up not going on his trip, and stayed on on Tuesday. My Aunt still came, brave soul!, and helped take care of all of us that day. We are doing much better today, and so far just Josh and I were really sick. Thinking back, Molly had issues at the end of last week, so we wonder if she brought it into the house. as a few of my family that were here for Easter also got sick. It gave me a new appreciation of how easy going Drew is most of the time when he feels nauseous from his treatments, and also reinforced that when I am feel totally drained and weak, that's when God's strength can really take over. It also makes you really appreciate when you feel better!
I'll keep everyone posted on how round 4 goes!
~Heidi
Well if it's been a quiet week so far for Drew, it hasn't been for the rest of us! Monday afternoon I started to have a stomachache, and by supper time I was full blown sick with a stomach bug. By midnight Josh had gotten sick too. It was a really fierce bug, but luckily the worst of it only lasted about 12 hours. Josh ended up not going on his trip, and stayed on on Tuesday. My Aunt still came, brave soul!, and helped take care of all of us that day. We are doing much better today, and so far just Josh and I were really sick. Thinking back, Molly had issues at the end of last week, so we wonder if she brought it into the house. as a few of my family that were here for Easter also got sick. It gave me a new appreciation of how easy going Drew is most of the time when he feels nauseous from his treatments, and also reinforced that when I am feel totally drained and weak, that's when God's strength can really take over. It also makes you really appreciate when you feel better!
I'll keep everyone posted on how round 4 goes!
~Heidi
4-1-16 Drew's 2nd birthday
Happy Birthday to Drew!! We've had a great day celebrating the wonderful gift that Drew is today! My aunt was there with him this morning, while we brought the party over! We got the conference room, and set up our walking taco bar, party trays, cupcakes and other treats! Josh took the day off, his parents were able to do the same, as well as my whole family again, and my aunt! Then the we invited all the nurses, his doctors, the PCAs that have worked with him, and even our favorite housekeeper! It was a great way to say thank you to them for all their hard work during all this as well. Drew had an absolute blast, and Molly kept saying it was the best party ever!
On the medical front, we are starting Chemo tomorrow. At our appointment on Thursday they explained that since his white count was still really high, as well as another immunity number, they suspect the infection may still be around. They did admit him, and did a CT scan to rule out any infection hiding in his body (which also showed the tumor now at 5.2 cm across--down from 7.1 a cycle ago!), which turned out to be clear. The cultures that had been drawn have all come back negative so far as well. We are waiting the 48 hours for them to stay negative and planning on starting Chemo tomorrow if they do. They feel confident enough to do the chemo and weaken his body again, but have decided its best to take the line out next week after we are done with round 4. Then they'll put a new line in the next week before they do the stem cell collection, since they'd have to place a special catheter for that procedure anyway. That way if the infection is lingering in the line it doesn't come out again right before they go to collect the stem cells and cause anymore delays. This will mean all the blood draws will have to be done with pokes until they get it back in (a bummer for Drew and us who go with him!), but they seem to think its better to be safe then sorry with this infection. SO, we'll just pray that everything goes according to plan and no extra complications come from this hassle of replacing the line.
I'll attach some pictures from his party today!
~Heidi
On the medical front, we are starting Chemo tomorrow. At our appointment on Thursday they explained that since his white count was still really high, as well as another immunity number, they suspect the infection may still be around. They did admit him, and did a CT scan to rule out any infection hiding in his body (which also showed the tumor now at 5.2 cm across--down from 7.1 a cycle ago!), which turned out to be clear. The cultures that had been drawn have all come back negative so far as well. We are waiting the 48 hours for them to stay negative and planning on starting Chemo tomorrow if they do. They feel confident enough to do the chemo and weaken his body again, but have decided its best to take the line out next week after we are done with round 4. Then they'll put a new line in the next week before they do the stem cell collection, since they'd have to place a special catheter for that procedure anyway. That way if the infection is lingering in the line it doesn't come out again right before they go to collect the stem cells and cause anymore delays. This will mean all the blood draws will have to be done with pokes until they get it back in (a bummer for Drew and us who go with him!), but they seem to think its better to be safe then sorry with this infection. SO, we'll just pray that everything goes according to plan and no extra complications come from this hassle of replacing the line.
I'll attach some pictures from his party today!
~Heidi
4-4-16
Round 4 is in progress! They hung the first bag of Chemo Saturday around 2 PM. And since this cycle the Chemo runs 24 hours for 3 days, it won't end until about 2 PM tomorrow afternoon. So far he's gotten sick some, but not too extensively. It's been so great to have my Aunt staying there with him, and us being able to go visit, but Molly having both of us here with her at night. The plan has remained unchanged, as far as the replacing the line goes. They will pull it Weds before we are released, and won't put the new one in until next week after the stem cell collection. We ask you to pray that nothing happens in between--no fevers, no new infection, no anything! The doctor's emphasize how important a successful collection is this round. There are back up plans, but we really want to get a good collection this time around. So a successful collection is also an important prayer.
Tomorrow is my birthday--30! My twin sister and I had a big Vegas birthday trip planned for this week. It's been a hard week already thinking about what we could have been doing right now. So much has changed in such short a time. But again, I"m faced with a choice. Pout and be sad for what isn't, or be grateful for where we are and what we do have. I have a wonderful family and great circle of friends that have been so supportive through all this. I couldn't ask for anything that hasn't already been done for me and my family. I have so many that are praying for us, and have extended touching words and encouragement that have really strengthened my heart. How could I be anything but happy and content with however we celebrate my birthday tomorrow!
~Heidi
Tomorrow is my birthday--30! My twin sister and I had a big Vegas birthday trip planned for this week. It's been a hard week already thinking about what we could have been doing right now. So much has changed in such short a time. But again, I"m faced with a choice. Pout and be sad for what isn't, or be grateful for where we are and what we do have. I have a wonderful family and great circle of friends that have been so supportive through all this. I couldn't ask for anything that hasn't already been done for me and my family. I have so many that are praying for us, and have extended touching words and encouragement that have really strengthened my heart. How could I be anything but happy and content with however we celebrate my birthday tomorrow!
~Heidi
4-6-16
Well Drew and I left the hospital just after noon today--a new record! We were wheeled to surgery to have his line removed bright and early--the wheelchair was outside our hospital room by 7 AM! I was bringing him back up before 10. The procedure itself I'm told takes a matter of minutes, but the process of putting him under and bringing him back makes it an hour and a half ordeal. But once back, everything fell into place to get us out for once--pharmacy had our stuff ready, the doctor team got our release papers going, it was the smoothest release yet! So now we are home, all pretty tired from our week of birthdays and a chemo round in general. Drew *so far* hasn't been too sick, let's pray that continues! We will give him the white cell boosting shot at home each night now, and start going in for labs Friday in Rochester to watch for his counts to start to come back up for them to do the stem cell collection early next week. Again, this is a huge week. Please pray that no new infections come up, and the collection is successful.
It was so nice to have my Aunt here this week. Talking to other families in the hospital, we really are so lucky to have so many willing to help. My brother is taking time off for the next cycle, and my cousin from Colorado has already made arrangements with her family to be here the 2nd week in May to be an extra hand. I have a freezer full of food, I have friends I know I could call for anything and they'd do it. And so many who are praying for us--just as important and uplifting. This is tough. It is SO hard. Some days I just try not to think of how much further we have to go. But having people to help carry this load, in whatever way they can, is such a blessing. The circumstances surrounding my 30th birthday might not have been what I was planning, but besides making me appreciate every singe day I have with my family, it also showed me just how many people love and care for us and our family. And that was a greater gift then I could have asked for. Here's a picture of my twin sister April and I, out for dinner to celebrate. Thank you all!
~Heidi
It was so nice to have my Aunt here this week. Talking to other families in the hospital, we really are so lucky to have so many willing to help. My brother is taking time off for the next cycle, and my cousin from Colorado has already made arrangements with her family to be here the 2nd week in May to be an extra hand. I have a freezer full of food, I have friends I know I could call for anything and they'd do it. And so many who are praying for us--just as important and uplifting. This is tough. It is SO hard. Some days I just try not to think of how much further we have to go. But having people to help carry this load, in whatever way they can, is such a blessing. The circumstances surrounding my 30th birthday might not have been what I was planning, but besides making me appreciate every singe day I have with my family, it also showed me just how many people love and care for us and our family. And that was a greater gift then I could have asked for. Here's a picture of my twin sister April and I, out for dinner to celebrate. Thank you all!
~Heidi
4-11-16
Well we were 3 hours from making it to our appointment this morning at the clinic without coming in with a fever over the weekend. Each day since Friday we've brought him to Rochester to have his blood drawn for the anticipated stem cell collection. Which actually went fairly well without the central line and having to do it the old fashioned way with a two year old. He really does a great job, bless his heart. Molly had a cough and slight cold this weekend and we did our hest to keep the germs away from Drew. But after a fussy night, this morning he woke up with a fever. And since he is very neutropenic (meaning his white blood count is low--zero to be exact), I followed protocal and brought him into the ER in Rochester after quickly dropping Molly off at daycare. We have been admitted, in the same room actually as last time! (I wondered when we'd start to repeat rooms!) The team came in on rounds and are pretty sure that the swab sample they took from the mucus in his nose will come back as some kind of virus that he's fighting. He's coughing some now too and because I said Molly had a cold they are thinking that will explain the fever, along with him being neutropenic. With the line out that decreases our chance of having an infection, but they will wait to see if the cultures grow by tomorrow morning that they took today in the ER. And if not, tomorrow they will put in the muherker (catheter in his neck) for the stem cell collection, but the doctor anticipates it probably will be Wednesday or Thursday that the numbers rebound to do the collection. They will keep doing blood draws to watch the numbers to time the collection right. It sounds like they will put the central line back in after the collection is done, before we are done with this stay. Good news for pincushion Drew! So for now we wait. For nothing to grow again, and for his counts to begin to recover so the stem cell collection can happen. Drew is pretty whiny and restless. Not the easiest way to be in the hospital! So please pray for all of us! Dropping Molly off abruptly is always hard for her and it looks like this week Josh will go back to being Super Dad at home while I'm here all week with Drew.
The saga continues!
~Heidi
The saga continues!
~Heidi
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