A whole new world..... I thought I would be more prepared going into treatment this time because we had already been through chemo before. I learned quickly during the first 3 treatments that I had NO idea what we were in for. The side effects were so much worse and the length of stay in the hospital was much more grueling. I was a bit worried to go into BMT (Bone Marrow Transplant) because I had heard that it was even more intense. Even after anticipating what it was supposed to be like I have learned yet again that I had NO idea what things would truly be like. When Chase was on his 3 rounds of chemo he would have some good days and then hit a wall. His counts would hit zero, he would quickly be put on a pain pump and TPN. He no longer wanted to play, did not want any light in the room because it “hurt”, and was hardly able to get out of bed or walk. I thought that the day Chase recieved his stem cells infusion was going to be a magical and special moment, but instead it made him so sick during the process. The next time that Chase required a red blood transfusion he saw the nurse come in with the red blood and said “NO NO it tastes like mud”. I had to explain to him that it was regular red blood but not his stem cells. Once Chase hit zero I was waiting for us to hit a wall and he never really did. He was still up during the day, playing and smiling and did not mind me opening the blinds a bit to get some sunlight in the room. What I have learned is that there are higher highs but also lower lows. When he crashes, he crashes quick and hard with little to no warning. A few nights ago he woke up in the middle of the night with a nose bleed, we tried to clamp his nose twice to stop the blood out of both sides of his nose yet the blood kept on coming. Because there was so much blood flowing it quickly drained down his throat and into his belly. Before I knew it he was vomiting blood while blood was still coming out of his nose. It was a lot of blood and I tried to remain calm and reassure myself that it was from the drainage into his belly, but all of my internal mommy alarms were blaring. The vomiting and bleeding went on for about 2 hours and I kept asking the nurses “does this happen, is this okay”? After multiple attempts to stop the blood and being up from 2 a.m to nearly 4:30 am they packed Chases nose. Poor little buddy sat so still despite the discomfort. After that Chase could not fall back asleep and was absolutely exhausted all day long. The good news is that he is still able to walk to the shower and is playing during the day. The nights are always rough because the fatigue starts taking a toll on his body, allowing the bad side effects of this process to seep in. Two nights ago Chase spiked a high fever ad the room was quickly a buzz with several nurses and a phone call was made to the doctor. Turns out this is the only fever that could be seen as one that is okay because the doctor said this happens when children start engrafting their cells. Sure enough the next morning his ANC was at 40. Although 40 is not a high number...it is above zero and it meant he was moving up. On Thursday morning Chase was at 285 so YAY cells. I have also learned that BMT is a whole new way of life and Marc and I will have to make this a lifestyle in order to make sure nothing is missed. In addition, these restrictions are not just during treatment but for 6 months to a year after! There are so many restrictions it almost seems overwhelming, just a few things of the many pages are: No parks, zoo’s, malls, churches, movie theaters or any place that would have a crowd. I was used to avoiding grocery stores, and places with lots of people the first time but we always thought “open air” places were okay...this time that does not ring true. no going out on windy days No animals, other than our dog, ANY time he touches Bella his hands have to be sanitized. No restaurant food, I learned this the hard way because one night it was late and Chase wanted a hotdog. I knew I should not get it from a fast food place but found a nice restaurant I could get a hotdog at. On my way back up to the room (hotdog in hand) the nurse stopped me and said I could not bring in ANY food from the outside for Chase. I had to leave his hotdog and tell Chase they were closed....poor guy cried for an hour. This is also hard because Chase has little to no appetite and every once and a while he will have a craving...like a Starbucks Frapachino and he is simply not allowed to have it. All food has to come from room service from the cafeteria prepared under VERY strict conditions. It is heart breaking to hear him cry because he wants something he simply can not have. No leftovers, all food must be prepared fresh and heated to determined temperatures AND must be eaten within 1 hour, if not it has to be tossed. No berries, no lunch meats, no un pasteurized products, no soft cheese. NO SHARING, he can not eat out of the same cereal box, chip box etc as the rest of the family, in fact they suggest only single serving boxes of cereal and other foods that come in a larger bag. There are also several restrictions for our home, fridge must be cleaned out completely with bleach 2 times a week. Floors have to be cleaned every 3-4 days. Nothing allowed on countertops. We will also be using a lot of a bleach wash (1/6 bleach and the rest water) for countertops, sinks, door handles etc. Any time someone in the family takes a shower or uses the bathroom the shower or toilet must be cleaned before Chase uses it. There are so many restrictions that I can not even write 1/4 of them. In addition I had a long talk with the Bone Marrow Transplant transplant team yesterday. I was hoping Chase may get a few days at home in Tucson and the answer was emphatically NO. It does not look like we will be released to Tucson at all during this process. They already have a start date of his next admittance of December 4th. There are still several things that must happen before he is released so we hope he can at least enjoy a few days out of the hospital this round. With all of the new restrictions it will be tough at Ronald McDonald House. Because we are not able to use any of the communal areas that means we will be pretty much be confined to the room and there is not an outside balcony that I can take him on to get a bit of fresh air. He can not eat any of the food provided in the kitchen or the meals that come in and we have a VERY small kitchenette that we will have to learn to cook in to insure his meals are within guidelines. No doubt it will all work out, we are just going to have to learn a new way of doing things. The doctor said he can not play at the park but perhaps we can stroll him around in the stroller, as long as he does not touch anything or get to close to any birds etc. So we will find a way to make his time out special. Ever since Chase was admitted he has been on “contact precaution” which means that any nurse or doctor entering the room is fully gowned wearing a mask and gloves. This also means he can never leave his room. I can tell he is really missing having playmates. He has finally made a friend named Aroroa in the hospital and she is LOVLY. Every once and a while she will wave though the window and it absolutely makes his day. Yesterday Aroroas brother was in visiting and Chase saw that he had an IPAD and he quickly put down what he was doing and screamed “Come in and play IPAD with me”. Before I could answer he is yelling, “Mom get my ipad we are going to play”. Words can not explained how it felt telling him that his new found buddy could not come in the room and play with him. He cried and said “I just want a friend”, I told him that I would play with him but it is just not the same. Later on I was able to get a pair of walky talkies that so he could talk to his friend Aroroa but he said “no, I just want her to come in and play.” ) : In the next 12 months we will be playing a delicate balancing act of trying to find ways that Chase is able to simply be a kid and keep him safe. The doctors and nurses have made it clear that even when his counts are up a fever can be LIFE THREATENING. I have always been a neat nick before but I dont know how this process does not make you completely crazy about germs. I already find myself a little nervous when I leave the hospital, not wanting to catch a bug that I could bring back to him. Today I focus on the positive, Chase is still up and walking to the shower, still smiling, still laughing and still trying desperately to be a 5 year old child. God will work on all of the rest. My heartfelt love to you all.
Posted on: Fri, 22 Nov 2013 13:56:14 +0000
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