Monthly Archives: February 2011

Back at it again…

02.28.11

All righty. I think I’m ready again to keep going with this big ol’ mess of a story that is now my life.

So tuesday morning rolled around, and eventually the Dr came in. Finally some good news was coming to lighten the blow of all the bad news we had received.  If my daughter HAD to have cancer, she had the kind we wanted her to have. She has ALL, which is the most common and the most curable type of cancer.  It has at least an 80% cure rate.  Now that we had this figured out, she could start her chemo.

Later that day the nurse came in and started the chemo treatment. It was overall, uneventful. She received this chemo treatment through her new port, so no needle pokes were needed. She just laid there the whole time, having no idea what was going on.

We also started to have visitors coming by what seemed like the bus load full. We are SO thankful to have so many friends/family members willing to come up and hang out with us during this time.  It helped to pass the time, and keep our minds thinking positive.

The rest of the week really just kinda blurs together. The meds Lola was, and is still on make her a bit moody. It was hard to watch her in the hospital feeling so grumpy. At one point she mentioned to me that she was grumpy and didn’t know why. She is such a sweet little girl and she was aware that she wasn’t feeling like herself. She even went so far to have us make her a little bedsheet tent, so when she was feeling grumpy, she could just hide from the world.  I really can’t think of anything else major that went on during that week. Maybe Matt will read this post and remember more than me. If he does I’ll add it in ;) Since I don’t have much to say about these next few days, I’ll just put in a bunch of pictures :)

This was one of those moments where I just couldn’t believe this was my life. My child is the kid with cancer, that people volunteer to tell bible stories. I am thankful for volunteers like this, but I just couldnt believe that it was my little girl that was receiving these services. 

Tuesday Lola had another bone marrow draw, as well as a spinal tap and she had chemo put into her spinal fluid again. This time Matt and I were a bit more prepared for Lola to be put under, and it was a darn good thing. We have all great things to say about the Children’s Hospital, but the time before this procedure was so awful that I felt like walking out and never coming back.  We got into the procedure room and it was just us and the nurse. The nurse was not our favorite nurse from the time before, and while i’m sure she is a great nurse,  the way she was preparing for the procedure was freaken me out. The dr that was supposed to sedate Lola ended up being called away, so she kept saying that she was just going to quick grab Dr. so and so…  and that he could real quick take care of this, and some of the things she was saying I was just praying Lola wasn’t paying attention to. When a 5 yr old is coming to have a procedure done, you should really chose your words wisely so that kid doesnt totally freak our about it. We had simple told Lola that she was going to have a little test done, but she would be asleep so it was no big deal. Well….  this nurse said way to much, but thankfully Lola didn’t pick up on it. Things just seemed really chaotic, and I almost asked if everyone was organized enough to continue with the procedure, but then things settled down enough and they were ready to get started.  There was no wonderful nurse this time trying to keep Lola happy. She just sat there looking like a tiny little scared girl.

Once Lola was put under, we left the room and went out to wait. The procedure was super fast this time, and before long we were heading back in to get our baby. We were told that it was still difficult to get the bone marrow out, but nothing like it was the last time. This worried me a little bit, based on the fact that last time it was hard to get the marrow out because she had SO MUCH leukemia in her marrow.

We headed back up to our room, and continued to get ready to go home. We had to wait awhile for Lola to get her chemo treatment before we could go, but eventually the nurse came in, gave her the chemo and we were ready to go. We wouldn’t find out until wednesday the results of the tests Lola had on Tuesday.

And that is our stay at the hospital. Next up…  coming home :)

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half time post.

02.27.11

This is my half time post in the middle of our ‘story.’

We are so blessed to have so many people who want to help. We can not even begin to explain how thankful we are for that!! I have received hundreds of emails, many from people I don’t even know telling us that they are praying for us, and that has helped so much to get us through these first 2 weeks. Thank you from the bottom of my heart.

A few people have set up ways to help us out. And rather than reply to each email I receive one at a time, I thought it might be helpful if I just put the info here-

First up is a sign up to bring meals. If we could get just a couple meals a week coming in, it would be great. We do not need every day covered. Lunch type items are great as well.  You can go to that website by clicking HERE

Next up is a way to provide financial funds. Having sold most of our stuff before leaving for tanzania, including cars, furniture, etc. We have many unexpected purchases that need to be made, not even to mention the medical end of things. Thank you all so much for helping us in this time of need!!  You can view that site by clicking HERE

For those of you interested in knowing, our address is- 3483 144th st., Dorr, mi 49323

We do not exactly have a phone number yet…  We have a cell phone that we have been using, but it doesnt get service where we are living, and I dont think it has voice mail…  that number is 666-0329. And im just say’n…  hey trac phone… great phone number you gave us ;)

The best way to reach us is via email- lindsey @ followingthecall . org       or   matthewjdeyoung @ gmail . com

Thanks again for all the support, prayers, emails etc. We love you guys!!!!

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To the hospital….

02.26.11

Lets see…. where did I leave off…
We arrived at the childrens hospital bright and early sunday morning. First thing was first. They needed to do a blood draw. The nurse attempted to put an IV in, and failed. After she didn’t get it she said ‘Holy Cow!!! I’ve never seen anything like that before!’ Not words a parent wants to hear….. 2nd try they got it in, and the blood sample was sent out. A while later a resident Dr came down and said that there was some concern that some of the blood cells appeared to be consistent with blood cancer. We were admitted to the hospital and initially brought to sort of a ‘general’ floor. We were on that floor all of about 6 minutes before they came and said we were being brought to a different floor. As they walked us to our new room, I felt like I was in sort of a slow motion. The sign said ‘hematology/oncology unit.’ That was enough for me. I knew it…. I did my best to hold it together, and held on to hope that we were just being admitted here as a precaution.

A short while later the Dr came in. She said she was concerned that Lola had Leukemia. I asked ‘How concerned?’ Her response was that she was quite concerned. I have worked in health care before, and knew that a Dr does not say they are quite concerned about something as serious as Leukemia, unless they are nearly certain that is what they are dealing with. She needed to wait until monday morning when some super duper blood machine was working to know for sure. I was a mess that night. Not only was I still attempting to adjust to the time change, but on top of that Lola was up constantly, AND…. I could not stop crying for anything. I was crushed. I slept 2 hours total sunday night. Monday morning slowly crept in and Lola woke up at 3am. She also was adjusting to the time change. It was a longggg morning.

Someone came to take a blood sample from Lola. It was so awful that I literally had to leave the room. Lola could not move her arms because they were in such pain. The lady trying to take her blood was attempting to straighten her arm, and then opted to attempt to take blood without putting the tourniquet on tightly. She later said that she did it like that because she wasn’t sure if Lola’s arms was broken. Why the heck didn’t she ask if Lola’s arm was broken?? So… she got kicked out of the room and we had to wait for someone else to come and take the blood sample. During both attempts Lola was screaming so loud in pain that I could hear her from the waiting area. I was weeping. No… I was sobbing. Sobbing out of control. It was AWFUL.


Eventually the Dr came in to bring us the news we had been dreading. At the moment she came in, the nurse and her helper were working with Lola, getting her IV fixed up or whatever… The Dr’s resident was along for the ride, another nurse, and some lady trying to take our menu request for Lolas food for the day. I felt like I was in the middle of a busy train station with the walls closing in. She tells us it is Leukemia, and the 8 million people start telling us what we need to be doing, and handing us books about Leukemia, forms to fill out. I had no idea what anyone was saying to me. I couldn’t hear it. They could have told me I won the lottery and I wouldn’t have heard it. My hands were reaching out to take things that were being handed to me, but I felt like someone else was controlling them. It was the worst 5 minutes I have ever had in my life. Ever. We did not yet know what kind of Leukemia Lola had. That was to be found out shortly.

A bit later we were all escorted downstairs to the operating room. Lola was going to be put under and have a spinal tap done, have chemo put into her spine, have a bone marrow sample taken as well as have a port put into her chest so that she could have blood taken and and take meds without needing an IV. She will keep this IV throughout the duration of her treatment. For years most likely.

First off, we are SO thankful for the nurse that was in that room with us. I don’t know what her name was, but she was so so so sweet. She was blowing bubbles with Lola, doing her best to keep things as light and happy as they could be. It was really busy in the room, as lots of different Dr’s were needed to do all the different procedures. They were getting ready to start and asked if we wanted to pray over Lola before they began. Matt said a prayer and it was time. The anesthesiologist warned us that the sedation took affect fast. Less than 10 seconds. They told us to come close to Lola and give her some love. They started to give her the sedation and all the sudden she fell back and looked completely dead. 1 second we were hugging her and she was talking, and the next second she was limp and unresponsive. Matt and I both totally lost it. We were weeping together. Was this really our life?? Was that really my sweet blue eyes baby? I just kept thinking about how sweet of a little girl she is. She cares about other people so much, and wants to keep people happy. Why did SHE have to go through this? She is just to sweet. Matt and I were given a pager and told it would be about an hour.

We had told Lola that we would have a little present for her after she was done so we headed to the gift shop. In case any of you are missionaries having a child go under sedation for the first time and considering shopping for that child while she is under… DON’T DO IT!!! I would have spent a million dollars on presents for Lola at that moment. And while we didn’t spend a million…. we sure spent plenty. I was a total mess, crying in the gift shop looking like a fool. I didn’t care.

We made our purchase and headed up to Lola’s room to put her new balloon/stuffed animal/blanket/pillow and everything else we bought up there. It had been over an hour and the nurse came in to tell us that the surgical room had called up, and that things were going fine but it was taking longer than expected because it was very difficult to get the bone marrow sample out. Again, not what a parent wants to hear. 2 hours later our little pager went off and we headed to go see our baby girl.

Lola was still asleep when we got down there and the nurse was wo

rking on waking her up. She told Matt he was welcome to hold her, so he scooped her up and sat with her on his lap. Lola looked just awful. She did not look like my sweet blue eyed girl. Our hearts were breaking. Once she came around we headed up to the room. The super nice nurse came with us. Matt and I were so heart broken and just a complete mess. Even the nurse cried. I did not know it was possible to feel so awful, so sad, so helpless.

The reason it took longer than expected for the procedure was because Lola’s bone marrow was so packed full of Leukemia cells that it was nearly impossible to get a sample out. The reason she had so much bone pain was because there was so many leukemia cells that were multiplying like crazy that the pressure on her bones was nearly unbearable for her. We later found out that 77% of the cells in her marrow were leukemia cells. And now on top of the pain in her bones, she was having pain from the bone marrow sample being taken, and from having the port put in. As a mother, it was nearly more than I could bare. I did my best to stay strong for her, but everytime I had my back to her, I had tears streaming down my face. How was it possible that 4 days prior to this I was in Africa and now my world had come crashing down and I may never be able to return to Africa? How was it possible that my sweet sweet little girl was experiencing pain like I couldn’t even imagine? How was it possible that I couldn’t even help my baby girl??

We had to wait until Tuesday to find out exactly what type of Leukemia we were dealing with. Again, we were having a very long night without much sleep, and full of tears. We are all wide awake by 3:30. I managed to get a grand total of 3.5 hours sleep that night.

Again here I am with a super long post. Time for another treat for those of you that made it through. Maybe some ice cream this time ;)  The story will continue later.

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How it went in TZ.

02.26.11

So I have had many many people asking many different questions from what lead up to us returning to the States to what we plan to do in the future. I’m going to attempt to write a few different blog posts in the next week or so in an attempt to answer all questions. Also, feel free at any time to ask us questions. Matt and I have chosen to go through this publicly and we are willing to share whatever we can. So…. I guess we might as well start at the beginning.

Lola first got sick in December, while we were at language school. We took her to the ‘hospital’ there. I can not even believe they can call that a hospital…. but they can. We had her tested for malaria 2 times during that week. The first test came back negative, the second came back positive. Although we have now found out that a positive test really means nothing… so we still don’t know if ever had malaria or not, and we probably never will. We treated Lola for malaria and she improved.
About a week later we were done with language school and headed off to our home in the middle of no where. Basically from the minute we got to our home we started to experience extreme resistance to what we were doing. We believe that satan did not want us there and he was making it clear.
-We had constant issues with our water.
-The very expensive water filter we brought that was supposed to last 3 years stopped working after a few weeks.
-Kia cut herself something fierce on a stick. Not just a little cut, like a blood gushing everywhere, leave a trail of blood kinda cut. And keep in mind that we couldn’t exactly run down to the local med center to get her stitched up.
-Our house was struck by lightning and it totally fried the small amount of electricity we had.
-We were borrowing a fridge from another missionary, and his broke…. which meant we needed to get a new one, which is pretty difficult when you live in the middle of tanzania with no electricity. And we did actually manage to buy one. And by the time it got to our house… it didn’t work anymore. It blew out hot air instead of cold. I had plans to use it as a bread warmer. haha…
-We were robbed.
-At one point we had all the other missionaries over for dinner, and all the sudden one of the lights just exploded and started on fire.
-Our car started to randomly not start.
-On top of this Lola was in the roller coaster of not feeling well for a few days, and then feeling ok… not feeling well, and then feeling ok etc.

Now, keep in mind that this was all happening over the span of only 7 weeks. It felt like every day something else was going wrong. Matt and I started to call our house the ‘house of Job.’ If your not familiar with the story of Job its about a wonderful man, Job, who loves the Lord with all his heart. Satan challenges Job’s integrity, proposing to God that Job serves him simply because God protects him. God removes Job’s protection, allowing Satan to take his wealth, his children, and his physical health in order to tempt Job to curse God. Despite his difficult circumstances, he does not curse God, but rather curses the day of his birth.
We really felt as though we were being challanged to see if we could handle it. And we did handle it. We managed to laugh through it all, and stay positive and happy. Even with all that I absolutely LOVED living in Tanzania. I didn’t ever want to move back to the states. I can remember sitting out in our yard with Matt, looking out at the amazing view of the mountains and talking about whatever crazy events we had dealt with that day. I said to Matt that I could not imagine with all that we had been through, what could possibly be coming next. I had no idea…….

So the beginning of Feb Lola started to get sick again and we decided it was time to get her checked out. She really didnt seem all that sick, just a bit tired and complaining of sore arms. We decided it would be easiest if Matt and Lola jumped on a little mission plane and flew to Dar together to go to the hospital there. The could get a flight out that next Monday, and then come back on Thursday. And then Matt said to me that once Lola was feeling better they were going to spend a night in a hotel with a pool. If they were going to be staying somewhere with running water, electricity, and a POOL I was totally going along. So the decision was made to cancel the flight plans, and our whole family would make the 3 day drive together to Dar. So off we went.

The first night we stayed at some with another missionary family at their home. During the night Lola woke up in pain saying that in addition to her arm, her legs now hurt. At that point she stopped walking due to the pain. We were so happy we had decided to go to get her checked out. 2 days later we arrived in Dar and took Lola in to be seen by a European Dr. She had some blood taken and the Dr thought that based on the tests Lola had mono. And then she continued to say that it could also be Leukemia, but she was confident enough at that point to send us on our way with a mono diagnosis. She continued to say that there was another test she could do to confirm it was mono, but it was expensive and she would need to send a sample of blood to South Africa and it would take a few days. There was no way we were going to return to our home, 3 days away with out knowing for sure. We didn’t care the price, we needed to know. She told us the results would be in thursday or Friday (It was monday at this point). The first day after she mentioned it could be Leukemia, I felt like I was living in another persons body. I wanted to curl up in a ball and wait for thursday. But… I still had this crazy little 3 yr old to take care of. Kia was feeling pretty stir crazy being shut in a tiny guest house with nothing to do. So Matt and I took turns entertaining her and taking her out for various reasons. After that first day I started to feel a lot better. The Dr. was confident it was mono. She wasn’t even going to do the extra test, we were the ones who told her to do the test. That Tuesday was my birthday, and we even managed to take the whole family out to the mall and do some shopping for stuff for our house in Mumba. Lola still wasn’t walking so we put her in a shopping cart and of we went. The next few days Lola started to go down hill. She laid in bed all day and was just down right miserable. Thursday couldn’t come fast enough. Lola was up most of the nights, needing us to get her ice packs, give her pain killers etc. The nights were miserable. Finally thursday morning at about 2am when I was up with Lola I checked my email. I had an email from someone from our missions office in Grand Rapids. He had been trying to get ahold of us, but wasn’t getting through. He left his cell number and said to call anytime. It was only 6pm in the states, so I sent him a text. We ended up going back and forth a few times, and then he managed to call so we could talk. He wanted to know what I thought about coming to the states. Even if it was just mono, he thought it would be best if we come back here, get Lola better and then we can go back to Tz. This was a decision I felt I could not make. I had visions of us coming back to the states, and by the time we got back Lola would be totally healthy and people would wonder what in the world we came home for. It is so expensive for us to fly home, I literally couldn’t decide. Eventually we were told that tickets we already being booked for Friday and that we were coming home. Thank goodness I didn’t have to make that decision.

So friday we finally here from the Dr that the test results had come back. It was mono!! Praise the Lord!! We loaded our bags up and sent them back to our home in Mumba. We figured we would just be in America a few weeks, and there was no reason to bring more than we needed home. It was sweating hot in Dar, so we didnt exactly have warm clothes along. We loaded the plane in our summer clothes and headed to the States. It sure was shockingly cold when we arrived in chicago. Me in Flip-flops, Lola in shorts… we looked ridiculous. We went to my parents house that night to grab a few hours sleep and headed in to the childrens hospital emergency room 8am sunday morning. Even though we were told it was mono, we were still concerned for Lola. She wasn’t walking and had these GIANT lymph-nodes under her jaw, and it seemed like every node on her body was beginning to swell up.

So… that was how it started in Tanzania. I’m sure after reading that Tanzania sounds like so much fun you are all going to be lining up to go there. haha… It really is an amazing place and I can not wait until I am able to return someday!! I’ll work on a post continuing this story and post it later today or tomorrow. Sorry I have no pictures for this post. Those will come in the next post…

If you have read through this entire post you deserve some sort of a prize. Perhaps a cookie or a candy bar. Go on… go get yourself a little treat ;)

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Visitors….

02.20.11

Hello all,
We just had the Dr stop in to check on Lola and review test results. Everything is still looking good and as it was expected to look. As we knew it would happen, Lola is becoming more at risk for picking up any and all sicknesses that come through her door. At this point we are asking for no visitors and absolutely no children. Even if your are healthy, you are still a risk for getting Lola sick. If you walked past someone in the grocery store who had a cough, you are at risk for getting Lola sick. We love you all and can’t wait to see you but right now, our first concern is for Lola. Thank you for your understanding.

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