March 30, 2011 in Uncategorized with 10 Comments

Yesterday morning, Gray began his bone marrow transplant. With all the information we were given in preparation for the transplant we still weren’t expecting all that it entailed. To begin, ten people were present for the procedure! Yes TEN!! There were a variety of doctor’s, nurses, students and even an advisor who was critiquing how the doctor ran the treatment. It was intimidating. The bone marrow transplant itself only took about 15 minutes and with set-up probably only a half hour but the entire process was very intense. First of all, the bone marrow they had harvested from Gray months ago was being stored in a large silver drum that the doctor’s wheeled in on a dolly. When they opened the container a sort of dry ice smoke swirled form the top. It was literally something from a movie. We were allowed to hold Gray during the procedure which was nice. The nurses gave him a high dose of benadryl before the procedure to help with nausea and it also made Gray very sleepy. In fact, once the treatment was over Gray was out cold, asleep. In preparation for the transplant all of the nurses in the room set everything up as if Gray would be getting very sick. One of the nurses sat right in front of our chair holding a bucket just in case Gray needed it and they scattered towels across the floor. They even asked that we not allow Gray to hold his favorite blanky because if he should happen to get sick on it they blanket would not be able to be cleaned. The nurse explained that soon after beginning the bone marrow transplant Gray would probably begin coughing and then throw up soon afer. At first, we thought the nurse was going to be right. Just as soon as they began giving Gray his new stem cells he began coughing. We were preparing for the worst. Thankfully and fortunately, though, Gray did not get sick!! The doctor said Gray is a “rock star”!! We were very proud and happy that he didn’t get sick. For the entire day after the transplant Gray was an unpredictable ball of emotions. One moment he would literally be telling jokes or up out of bed dancing and within a split second he would be in a pile on the floor sobbing huge tears and screaming that he “wants to go home”. All we could do was laugh along with him during his good moods and comfort him during the breakdowns. There is no way to explain to a three-year-old what is happening around him or why he can’t go home to his own bed,  hisown toys and his own family. We don’t even understand why this is our situation so how could we possibly make him understand.

There was one seemingly minor side effect of the stem cell transplant that we hadn’t thought too much about but has ended up impacting us more then we could have imagined. You may find it kind of comical when you find out what it is but truly we cannot tell you how badly this simple little side effect is to handle. The doctors had given us fair warning that the chemical used to preserve Gray’s bone marrow until the transplant has an impacting odor. They said that most families describe it as smelling like creamed corn. Well…there’s no way around it…the bone marrow smells EXACTLY like creamed corn. In fact, I don’t think any of us will ever be able to eat creamed corn ever ever again! The hospital room smells like creamed corn, Gray himself smells strongly like creamed corn and any fluids, ANY FLUIDS, that come out of Gray smell even more strongly of creamed corn! At this point, we’re wearing hospital masks to change Gray’s diapers. It’s overwhelming. It makes you sick to your stomach. The constant stench of creamed corn is definitely a side effect we would take over Grayson being sick but it truly is something we couldn’t have imagined! Please continue to pray that Gray will experience as few side effects as possible. We misunderstood the doctors in the beginning. We thought they told us they expected Gray to get sick on day 6 of his chemo treatments but really they were telling us it would probably be day 6 of the transplant. So, we’re still supposedly waiting for the worst of it. We know, though, that Gray is a strong little man and our God is even stronger. We are praying for minimal sickness and a testiment to how great our God is. He is so great that He even cares to keep our little boy from getting sick during his stem cell transplant! Also, just please continue to pray for our family during this month. A full month in the hospital is so overwhelming. We do have alot of help from our family sitting with Gray so that we can run errands, spend time at home and simply sleep but having your entire family life in a total uproar with half of you in the hospital, half at home and no real sense of normalcy it is something you can’t prepare for and don’t ever get used to.

“It is the Lord who goes before you. He will be with you; He will not fail you or forsake you. Do not fear or be dismayed.” Deuteronomy 31:8