Make A Child Smile

Doug's Story
written by mom Ruth

Doug was your typical, healthy baby.. no colds to speak of, and certainly nothing more serious.

On June 29th, 2000, Doug had a cold for most of the week and was sleeping a lot. Initially our doctor said that he was dehydrated, so he was admitted locally for hydration. The local admission was short lived because a routine CBC showed a white count of 103,000 (normal 4,000-12,000); with 94,852 blasts or cancer cells. When our family doctor told us that they thought Doug had Leukemia, I was petrified.

Doug and I were quickly taken to Children’s Hospital in Iowa City by ambulance. The next morning, the doctor confirmed what had been suspected by our family doctor. Doug had Acute Lymphoblastic Leukemia (ALL) and needed to start chemotherapy immediately. Doug responded quickly to his chemo and by the end of July 2000 he was in remission!

Between September 5th and August 6th, 2004, Doug had an awesome year! He went to preschool like a normal boy; played; swam; and even climbed a mountain in Minnesota. Then on August 6th, our world fell apart for the second time. Doug had bruises I didn’t like, so I took him for a CBC. That showed a probable relapse of his Leukemia. That morning, our original pediatric oncologist got to confirm the relapse. The only thing to do for relapsed ALL is a bone marrow transplant. Without one, Doug didn’t have a chance. During the first part of September we were told that they found a donor who was a 100% match! He received his new marrow on October 8, 2004.

Things went well for Doug until July 16, 2005 when he relapsed again! We started on chemo for the third time in his short little life; not sure we’d achieve that remission, but we did! While Doug fought, the doctors contacted his donor from the previous year and he agreed to donate a second time. Only this time it was stem cells that they were after. He got his stem cells on August 25th, 2005.

On April 17th, 2006 we found out that Doug had AGAIN relapsed his cancer! I remember sitting in that clinic bawling my eyes out. They told us that there was only a 1% chance that we’d even be able to get him back into remission and if we managed that there wasn’t much else they could do. They said they weren’t talking cure this time but maybe buying him some time instead, if they managed remission. He was admitted on the 18th and started on the same course of chemotherapy that he'd had in the very beginning in 2000.

Then........ Doug had relapsed again on November 14th, 2006. He'd been in the hospital with fevers and some kind of infection that they couldn't pin down. He had been on three antibiotics prior to getting the fevers and when he did get one on the 11th they put him on a different antibiotic. This one seems to have caused a rash but that wasn't linked to the antibiotic until Monday, the 13th. At that point that antibiotic was discontinued, but by then the damage had been done and he was covered in rash.

During the 8 days prior to finding his relapse Doug had to receive platelets and red cells more than once. The Friday prior, the doctors told us that they believed he was still in remission and that the chemo had knocked his counts down and his bone marrow was slow in recovering. They decided on the 13th that they should give him some white cells to help boost the healing of whatever infection he had. On Tuesday they decided that they should check his bone marrow to see if they could figure out what was going on. At the same time they did a biopsy of the rash. The results of the bone marrow aspirate came back four hours after they did it. I knew when the doctor stood in Doug's doorway and motioned for us to come with him that the results weren't going to be good. I had that gut feeling that his cancer was back but I was in no way prepared for the rest of what they told us.

For six years we'd been able to fight this cancer and every time they had a game plan, and Doug and God kicked it's butt. This time there was no game plan. They told us that there was nothing that they could do for our precious child. It was a matter of time. We were told that by Christmas Doug would be gone. They couldn't treat the infection either because he had no white cells to help them do that, and his marrow was 100% cancer cells so he had no way of making any white cells. The infusions that they were going to give him weren't going to help without his body making some on it's own either. I told his doctor that I couldn't tell Doug that and he told me he would do it. I think that was probably the hardest conversation I was ever a party to. They laid it out for him and he told the doctor "I don't want to die."; "I beat it four times I can beat it again."; "I don't want to leave Mom and Dad." The doctor explained to Doug that they couldn't do anything and I watched my son's spirit fade. I don't think he gave up at that point - I don't think he ever gave up- but he faded a bit.

The next two days in the hospital he kind of went downhill, but on Thursday when he knew we were taking him home that day to see his kitties he perked up a little bit. He tried to eat and he stayed awake most of the day. I think he thought that if he acted the way he had the previous couple days we would change our minds and not take him home.

We brought him home on the 16th of November knowing that it was to watch him die. We had an order for fluids overnight because I didn't want him to dehydrate. Our hospice nurse came in and hooked him up to a morphine drip and suggested to us that we didn't use the fluids that night because he was overloaded and reconsider the next day. We followed her lead on that. We also signed a DNR (do not resuscitate). The next day (Friday) she came in and told us that she heard fluid in his lungs and she thought he probably had pneumonia and would not likely make it through the weekend. He was having problems peeing so he agreed to allow her to put in a catheter. That was a long process and we found out later that it was hard to get in, and she had been told by his doctor in Iowa City that she could drain his bladder through his abdomen if necessary. Thankfully that wasn't necessary since that would involve a long needle being stuck through the skin.

We started to lose hope at this point but Doug again showed them that he wasn't going to do exactly what was expected of him. When the nurse showed up on Monday she was surprised that A) he was still here and B) the fluid in his lungs was gone! She could hear his heartbeat through his lung! Doug had beaten the pneumonia. His fluid overload had also gone down quite a bit. He still was having intermittent fevers which we tried to control with Tylenol and then Motrin. The rash that he'd had in the hospital turned to blisters the day after we got him home. These blisters filled up with pus and then popped. He saw one on his arm and that scared the daylights out of him so we were thankful that he never saw his face. The blisters finally popped but then his skin turned leathery until it all peeled off; which took about a week.

Things breezed along pretty well through Thanksgiving. Doug's morphine was set at a low rate of 2.9mg/hr which seemed to cover any discomfort he had other than when he tried to stool. At that point we were allowed to give him a bolus to help ease that discomfort. On Thanksgiving he thought that he had to stool and the idea scared him and us because it would involve moving the catheter, the morphine pump and him into the bathroom and getting him undressed. He decided that adult diapers might be an okay thing because then he could just go and we'd clean him up.

The day after Thanksgiving, Doug woke up and couldn't open his eyes. Between the nurse and myself we got his eyes open only to find out that they were bleeding and he couldn't see anyway. She said that his pupils were strange and she thought his corneas were bleeding and that it was a sign of internal bleeding and he wouldn't be able to see again before he passed. We started another weekend where I started to lose hope again. Even though he couldn't see he still insisted that we play video games and read him stories and read him his MACS mail. While we played video games if we got stuck somewhere he could tell us where we needed to go just by listening to where we were and he was always right! He smiled during stories and even helped finish one of them even though he hadn't heard it before. And when he was read his last batch of MACS mail he smiled-a lot.

Things didn't change much until the Wednesday before he passed. We were cleaning him up after a terrible stool and he was crying even though he'd gotten a bolus of morphine and his tears were clear! Between Friday of the week before and that morning his tears had been pink indicating to us that his eyes were still bleeding. When the tears came out clear that afternoon, we figured his eyes were no longer bleeding and when his hospice nurse came in the morning (Thurs) he insisted that she clean off his eyes so he could open them. She was reluctant but she did what he wanted-he had that way about him. We were all surprised and very thankful when she got them open and he could see us! He spent the next couple days actually watching the video games and looking at the pictures in the books and smiling even more because he could see his kitties instead of just hear them or feel them.

The day before Doug passed turned strange. He became what the hospice nurse called "restless". His morphine was increased by large amounts even though it hadn't been since he came home. He insisted that morning that he be taken off the couch even though he hadn't stooled. So we moved him to the floor and I finally got to hold my baby boy-I hadn't been able to do that to my satisfaction on the couch. Perhaps that was his biggest reason for wanting to move because he snuggled into me as much as he could and between his father and the nurse he got propped with pillows-first to look directly at me and then to help hold him against me. Although he was in no pain he couldn't get comfortable and was having, what we came to find out later, were conversations with God. He repeatedly said "please no" and "not yet".

After a long day where large boluses of morphine would only settle him down for 30-60 minutes, the nurse got an order for IV Valium. This helped to settle him down for 3 hours at a time-time where we both took a nap. That night we moved him to an air mattress and I laid down next to him. We also took pictures of each of us with him and then our final family photo-all laying on the mattress-all hugging Doug.

The morning that Doug passed away we woke up to him breathing at a rate of 60 respirations per minutes. It was 7:00 am and we called his nurse at home anyway-she'd given us her number just for that reason. She listened to him breath for about 10 seconds and then said she'd be here within 10 minutes even though she lived 20 minutes away. When she got here we gave him a dose of Valium but that didn't slow down his breathing. She moved the mattress out from the couch just a little so that daddy could get on the other side of him and we lay with him and talked to him; telling him how much we loved him and that it was okay to go. He fought it for awhile and then finally his breathing slowed down and just stopped.

We are having a hard time coming to terms with his death. How does someone go from attending school and shopping for other children one day to being gone 27 days later? How did this happen? Why couldn't he continue to win? Why did God call him home and not someone else's child? I know that last one sounds selfish, but it's a normal question and I'm sure all other parents who have lost a child have probably asked the same question. Doug was happy and healthy and then suddenly his cancer was back and there was nothing that could be done...We miss Doug very much on a daily basis but we know that he is in Heaven and he is cured. He is probably playing and snuggling kitties that have passed and sitting on God's lap when he gets the chance. We know that he will be waiting for us when it's our turn-to welcome us with open arms. In the meantime we will try to keep his memory alive and honor it to the best of our ability.

Thank you to everyone who ever sent him a card or a present. He loved receiving mail from each and every one of you and it always did what it was intended to do....... it made him smile.