| Weekend, August 26 - 27 minus 16 & 17 |
The weekend prior to Kieran's move onto the BMT was pretty much our learning phase. Various staff popped in to explain the treatment regimes, discuss diet and development needs for Kieran, talk about local amenties, and generally ensure we were prepared for what lay ahead. A parent of another BMT child also came in while we were alone and heaped praise on the staff . She also gave a kind of testimony about her own experiences.
We also had to introduce Grandma to the country. On Saturday night after Kieran was asleep we went out to sample the delights of Newcastle. Appetites are not quite what any of us were used to. The first restaraunt we looked in had Kangaroo on the menu. We noticed that the second restaraunt (the one we finally opted for) had Crocodile and Ostrich on the menu. None of us felt so daring however, and fish or chicken or vegetarian was our elected fare. |
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| Monday, August 28, minus 15 |
Kieran moved down to the BMT ward today. Nursing staff had evidently been working hard to get this order as everything was rearranged from when we'd been shown Kieran's space earlier. Vanessa and her mom also got to work converting the space into a home, decorating the walls and making sure Kieran had all the toys he could possibly want.
Kieran himself had to learn the rules of his new environment. To be allowed on the floor it first had to be moved with disinfectant, then a mat had to be put down, and then the mat had to be wrapped in a sterile sheet. Kieran was only allowed in the area defined by the sheet. He quickly tried to extend this area, and as soon he left the sheet his mother lightly admonished him and put him back on the mat. It wasn't until this moment that Kieran truly realised what was ahead. He crumpled down on his sheet and wept for a long time. |
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| Tuesday, August 29, minus 14 | Kieran began receiving, among other things, his ATG. This is an antibody taken from rabbits that will begin to kill off his T-cells (this is the objective.) He began receiving this about 4:30 p.m. He had two lines connected to his central line. The medication was set to enter his body at a slow pace, and this pace is gradually increased as the process continues. Other than being connected to these tubes and also connected to monitoring wires attached to his chest, he went through his normal bedtime routine, finishing off with a good night to Mommy as he prefers to fall asleep on his own. | ||
| Wednesday, August 30, minus 13 | Kieran had peaked a fever during the night which had been brought under control and was found in a less than playful mood this morning. He wanted to be held and sat in Mommy's lap all morning. Sometimes it appeared he had dozed off, but it was not sound sleep as he would voice disapproval when she attempted to put him in his cot (crib). His tubes had been disconnected as the first injections were completed during the night. About noon he roused himself and began to play but was content to play on a lap or in his cot. He still settled down to his routine nap in the early afternoon and was awake later to play some more & watch some videos. While he has continued to refuse food, he did drink water and take his milk. He did not, however, appreciate some of the oral medications which apparently were not pleasant to the taste. Nor did he appreciate the medicine that Mommy had to force into his nose to attempt to reduce infection that had begun to grow there. In the afternoon he was again hooked up to the tubes for his ATG treatment. He had also begun sneezing, often ejecting fair quantities of mucous. Even with all these tubes attached his Mommy managed to bathe him, give him his milk, & attempt to brush his teeth returning him to his 'routine' bed time experience. The only addition to the routine followed his teeth brushing by adding a yellow oral medicine designed to clean the bacteria growing in his mouth.. | ||
| Thursday, August 31, minus 12 | Kieran was up and playing with no fever again this morning. He was freed from the extra tubing and enjoyed playing all day long, except for his nap time. He was feeling well enough to strongly resist the nasty tasting oral medication & nose medication but other than this enjoyed a very pleasant day with a new toy dump truck. He was hooked up again a little earlier this day as he had a 4 hr immuglobulin infusion treatment before receiving his day's dose of ETG. He took these in stride. By today, when he sneezed, small amounts of blood was mixed in the mucous In the evening, Paula the play therapist, brought him a small battery powered train set on a small track. He was memorized by it but finally helped us put it to bed. | ||
| Friday, September 1, minus 11 | We had to work quickly this morning preparing Kieran & his play area as he was anxious to return to his new toy - the train set. He played with this for 3 solid hours or more. He received his first platelet infusion today because of the blood in the mucous. He napped well and was up to play some more before bedtime. His received ATG again. | ||
| Saturday, September 2, minus 10 | Kieran began receiving Busulphan today and because of the possibility of liver damage with this one he had blood samples drawn at 7 different times throughout the day, beginning at 8:00 a.m. These were sent by special courier to be tested so the dosage can be accurately controlled for his own particular makeup. The platelets had done their job as no further blood had been seen. Kieran had visitors today. His Daddy came and Uncle Richard. Frank was really impressed with the smooth clear skin Kieran has at this time. Kieran decided this was an excellent opportunity to see if he could manipulate his caretakers into lifting the recently established rules of conduct and raised quite a fuss when unsuccessful. He also seemed a bit sleepy as he kept lying down. This may have been caused by a sedative he had also received. However, late that afternoon Paula again showed up and this time brought two more trains. Now he had one train chasing another on the track and a third to pull around himself. She also added a toy train station. | ||
| Sunday, September 3, minus 9 |
Kieran had a fantastic morning! His skin looked marvelous and may have even had more color than customary. The ATG was stopped and as Busulphan is given orally, he was free of the tubing all day long!
He played with trains, cars, trucks, and Paula showed up with a Kieran sized table and chair, color markers and paper, and three paint pots. She explained that the markers, paints, and other such items she brings, have first been tested in the laboratory to be sure that bacteria will not grow in them. Only those that passed their tests may be used. Paula showed Kieran how to paint his hand & make an imprint on paper but he preferred to use his special paint brushes (sponge swabs used for applying medications.) A marvelous side benefit of the table & chair occurred at lunch time as Kieran fed himself a full jar of food. Other than crisps(UK)/chips(US) this was the first solid food he had eaten since he entered the BMT ward, choosing instead to take several bottles of soy milk. He still took a full bottle of milk before his nap. He repeated this at supper time, delighting his Mommy tremendously. One of his doctors stopped by today and stated that the doctors were pleased with his progress thus far. |
| Monday, September 4, minus 8 |
Kieran woke happy & excited about another day with his new toys. He politely greeted everyone & waited semi-patiently for the play pad to be assembled. By the time this was accomplished, however, he had become lackadaisical. It wasn't long before the reason for this mood change became evident. The first heave came unexpectedly and we were grabbing for gloves & bags to clean up the toxic excretion. This accomplished, Kieran's mommy, now clothed in a hospital cover gown over the plastic apron which was over her street clothes, cuddled Kieran with glove covered hands. A fresh bowl and other ready supplies at hand, the two watched videos. His fever was checked but his temperature was normal. Apparently this was a reaction to the Busulphan.
A few more less severe expulsions occurred during the next couple hours. Then Kieran began to perk up and soon was playing on a freshly covered play mat. When lunch time approached he downed a small container of apple sauce and took a full bottle of milk as he prepared for his afternoon nap. The afternoon play was enhanced as Paula brought added musical instruments to his repertoire of amusements. One of these was a xylophone with wheels at one end and a handle at the other which Kieran played like a drum or pushed around like a vacuum, though he labeled it a car. The other had keys. When the keys are pushed, something underneath the metal bars of this instrument strike the plates and produce a musical note. Kieran played the 8 keys in order, back and forth, creating the sound of someone practicing a major scale up & down. The music Kieran created with these toys roused such excitement in Kieran's suite mate that that young lad was bouncing up and down and laughing with joy! After showing off his recent accomplishments, Kieran once again returned to his trains and people. He also downed some more food at tea time, filled an aromatic nappy to overflowing, soaked everyone who was near his bath with his exuberant splashing, & took another bottle of soy milk at bed time. |
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| Tuesday, September 5, minus 7 | Kieran once again awoke ready for another day of play with undivided attention from his mommy. If he were not confined into this unique environment, an observer would probably see a normal happy toddler. In the afternoon, however, he began scratching & his face began to look a bit blotchy. This is probably because the hydrocortisone he had been receiving intravenously had been stopped when the ATG stopped. Some of Kieran's paintings were mounted and hung on his wall, much to his delight as he identified what he had painted. | ||
| Wednesday, September 6, minus 6 |
The doctor this morning was pleased with Kieran's progress but disappointed Kieran was not playing with trains during his visit. Apparently Kieran and his trains are the talk of the ward. The reason for this temporary lack of interest in trains was a new car that had arrived in the mail. It came complete with a person that talked & a story book featuring these toys. Today was a day of rest from heavy medication. There was no Busulphan. The skin on Kieran's face has begun to dry up despite the lotions. While he had no other visible signs of eczema, his whole body must have itched as he scratched throughout the day.
When Paula appeared in the doorway Kieran couldn't clear away his toys fast enough to suit him as he was sure Paula would have something else new and exciting. He found his own way of playing with the plastic objects she tried to get him to thread on a string. He showed his expertise at putting different shapes through correspondingly shaped holes. For all these efforts she rewarded him with a blue plastic rocking horse! Mommy had to feed him lunch while he remained mounted on his horse. Upon waking from his nap, he also rode it all afternoon & managed to eat his tea while still mounted on his horse. The only other notable accomplishment was his Grandmothers antics to coerce him into drinking 600 ml of fluid, above what he would normally have taken. While this was accomplished and he did still eat his tea, he didn't seem really interested in drinking all his bedtime bottle. |
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| Thursday, September 7, minus 5 | At 6:00 a.m. the nurses started Kieran's IV fluids to wash his kidneys during this stage of his chemotherapy. Later they added an additional chemical IV (Mesna) which will also help prevent today's new type of chemo from staying in his body too long. About 11:00 am one of his doctor's came and added the IV of his next type of chemotherapy (Cyclophosphamide.) This dripped for four hours. When this was completed, he received immuglobulin again. The doctor also gave us permission to use some hydrocortisone lotion on his eczema as we did before Kieran entered this ward, which we did as we prepared him for bed. Once more Kieran seemed to handle all this quite well, spending most of his play time and eating his meals while riding his horse. He has really warmed up to the staff and talks to each one that enters his line of sight. |
| Friday, September 8, minus 4 |
Kieran had a bit of a fever during the night, but it was treated immediately. This morning Vanessa noticed a few small droplets of dried blood on Kieran's pillow. He sneezed out some mucous and when he wiped his nose (himself) he wiped a bit of blood. Neither of these was really enough to be alarming, but while dressing he scratched his upper right arm and small red spots appeared under his skin, like red freckles. This is one thing that occurs with WAS. It's a sign of low platelets. Each of these tiny marks is actually a small bruise for Kieran. In addition, the entire area where he scratched was left with a pale red hew -- like another type of a bruise. We asked that a doctor come to examine this and determine if more platelets should be given to Kieran. One of the doctors came by Kieran first as he started his rounds and the team of doctors did decide it was time to give him more platelets. This area apparently did cause some concern to Kieran as well, because he held that part of his arm frequently throughout the morning. It didn't keep him from rocking a few hours on his horse or playing with his trains again, though. He also ate a good lunch.
Kieran woke from his nap with a low grade fever which continued throughout the afternoon. He still played with a new small tow truck driven by Bert from Sesame Street, even while riding his horse. He also played with his trains and cars. He turned down juices most of the day and when tea time came around he tried a couple different meals but refused them, acting as if his taste was off today. Some apple sauce hit the spot and he even asked for more. Naturally we had another container opened before he decided he was finished with his tea afterall. Then he began to show signs of nausea. He spent at least the next hour cuddling in his Mommy's lap. Because this was not normal for him, the nurses took some blood cultures to send to the lab. By the time the nurses had finished playing with all Kieran's tubes he was talking to his suite mate and teasing his Grandma. So bath & preparation for bed followed our normal hospital routine. |
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| Saturday, September 9, minus 3 |
Kieran had continued to have a low grade fever throughout the previous (Friday) night. About 10:00 p.m. he vomited. He was given an additional medicine to help stop the nausea and sickness that accompanies chemotherapy.
His low grade fever continued today. He was examined by one of the doctors this morning as usual. Kieran was only partially interested in playing, preferring to watch the telly most of the morning. He refused any fluids and lunch as well, but did take a bottle for napping. About this time the doctor returned to administer today's chemotherapy through an I.V. We were told that Kieran was quite anemic today and would be given blood later. After his nap, Kieran was thrilled to see his Daddy and cuddled on his lap a couple hours. His fever had raised by this time as well so as soon as the chemotherapy infusion was completed more blood cultures were taken. Then Kieran began receiving whole blood. About 30 minutes after the blood began to drip into his body he began to perk up and even asked to play on his horse. He was soon laughing again and teasing all in sight once more, bringing delight to all around. He asked for a dinner which pictured peas on the label. Opening the jar, released a strong aroma of cauliflower, however, so he refused to even try it. Instead he a bit of apple sauce followed by a small package of potato crisps. His weight is now being checked as much as 3 times a day but he is holding steady thus far (having lost 1 pound by the time he entered this ward.) |
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| Sunday, September 10, Minus 2 |
Kieran woke in a happy mood but had not yet had his breakfast milk so while he drank this, his room was cleaned thoroughly, as usual, and a play pad prepared him. By this time he was asking for his horse and even asked for a drink of pop. This only lasted about an hour before he vomited the fluid he had just received. He chose to spend the rest of the morning playing more quietly in his bed with his train and cars.
The doctor said one possible explanation for the fever is the fungal infection they found in Kieran's stomach. Kieran began receiving his last dose of Chemotherapy this afternoon. He was also given a different anti-biotic and more platelets. He'll also receive some more whole blood during the night. His afternoon Kieran spent laying in his cot watching the telly. He had refused milk before nap and would only eat a few ice lollies and a small bag of potato crisps this evening. However, he did enjoy his bedtime bath. |
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| Monday, September 11, Minus 1 |
Kieran's fever had subsided when we arrived this morning. However, as he was fussy already we knew that he was not feeling well. We also saw that he had not touched his milk from the night before. He spent the morning cuddling on his mother's lap. From the way he acted we wondered if his throat or mouth were sore. He still refused milk entirely but took one ice loll. He asked for soda pop and after Grandma went to about 6 different pop machines located throughout the hospital, he decided he wouldn't drink this after. Finally his Mommy started spooning the pop into him, which he accepted. He even took a couple spoonfuls of milk but then refused more of this. The doctor told us to push the milk because if he continues to refuse this, it will be necessary to have a line inserted through his nose into his stomach so that his digestive system continues to know how to process food. However, all we were able to get him to eat was a small container of strained fruit that we called apple sauce.
We tried to get him to take half a bottle of milk when we laid him down for his nap, but he refused it again. So we went shopping at lunch time, searching for some cereal he might like, hoping to get some milk in him this way. We returned but the cereal trick did not work. However, Vanessa had picked up some straws & he downed 100 ml. of milk after a couple bites of cereal. At first it took some coaxing, but then he inhaled the milk. Before we could finish praising him for this accomplishment, though, he gave it back in one of the spit up bowls. A few minutes after we had this mess cleaned up, he was asking for more. Cautiously we gave another small bottle. This stayed down! Then he perked up & eventually was playing with his train set on his table while sitting in his chair. He enjoyed his bath. Then refused any more milk at bedtime. Because the nurse was concerned that he have some milk in his stomach, he was coaxed into taking maybe as much as a tablespoon. Having done this he proceeded to heave it back. Eventually he settled down & went to sleep. He was receiving Cyclosporan as we left. |
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| Tuesday, September 12, BMT Day |
Kieran was all smiles and playful this morning. His fever had subsided during the night. As he played he developed only a very bit of a fever. Vanessa pulled a brand new toy out of a big plastic bag and he quickly told Grandma he was through with everything else we had put in his cot with him. His new toy was a fantastic musical keyboard loaded with features for the young child including instrument, animal, and amusing sounds. It could play a few selected tunes or allow him to make his own. When it played, the white keys on the keyboard would light up. It also had various rhythm choices. After his routine examinations and a chest x-ray (due to some dry coughs he experienced at times) he drank about 100 ml. of milk.
Later as he continued to enjoy his new instrument, he began to look flushed. We prepared for an explosion by putting spit-up bowls within easy reach, etc. but found that the other end had been busy instead. After changing all bedding & clothing he settled down again to enjoy his toy until nap time. Kieran's nap time is usually when Mommy and Grandma get a break for lunch & a bit of relaxation. Today, however, we found we wanted to keep busy as we knew we were waiting for the marrow. Finally we returned to the hospital on the early side but Kieran cooperated and woke as we entered the ward. We barely had time to get him ready for afternoon play when the announcement came that the marrow was on its way. We had been prepared that it would not be exciting and for those of us who had seen so much medication already inserted into Kieran's tubes, it was far less than anticipated. A nurse came in with a small bag of thick plastic filled with yet another yellow-brown fluid. After confirming Kieran's name on the label of the bag, it was suctioned into a large syringe that was then loaded into the machine that pumped it through one of the tubes into Kieran's blood. He received 42 ml. of treated marrow over the next hour. Then the line was flushed to be sure all of it had entered his system. So the wait begins. Kieran's worst weeks remain ahead, according to what we've been told and what we've read. In the meantime, we had to deal with Kieran's current symptoms, namely his diarrhea, inability to eat or at least keep much in his stomach. Thus the inevitable happened. At bedtime a feeding tube was inserted through Kieran's nose into his stomach. This is referred to as an nasal-gastric or NG tube. Needless to say this upset him greatly! After a lot of crying, coughing, hacking, and attempts to wipe it off his face, he listened to his Mommy explain the importance of keeping it in. Then he still didn't like it but settled down enough to let us put him to bed. Unfortunately Kieran vomited during the night and it contaminated his NG tube so the nurses had to take the first one out and replace it. |
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| Wednesday, September 13, Plus 1 |
Kieran has apparently resigned himself to the fact that the tube in his nose must stay there. It still causes him some discomfort but instead of trying to yank it out, he now protects it. He spent most of the morning holding it onto his face (its actually taped to his cheek with just enough left to try to tuck behind his ear, out of his way. We told him it was like wearing glasses, hoping this would help him accept the feel of it on his head.
In spite of the tube, he still asked for milk frequently. Unfortunately in the morning most of it came back up. The doctors decided to put him on an additional anti-sickness medication to combat this problem. In the afternoon we had limited success by giving him smaller portions at a time. One particular incident that concerned all of us for awhile happened after his second dosage of medication for his upset stomach. Shortly after this had been injected (through his central line) he did an abrupt mood change. Almost in an instant he went from a happy playful teasing Kieran to a lethargic, pale, & almost sound asleep lad. His name nurse checked his vital signs and all seemed well. We were about to take a break & let him have a nap, when he just as abruptly came back to the playful teasing happy boy. |
| Thursday, September 14, Plus 2 |
Kieran apparently is continuing to follow the pattern expected by his doctors. This currently means that he is reacting to the chemotherapy by vomiting, diarrhea, & an overall lack of energy. One doctor explained that basically at this point he felt like (well perhaps we should just say he feels absolutely rotten.) Today's doctor also assured us that the sudden mood swing Kieran experienced yesterday can be part of the pattern as well and was nothing to cause great concern.
According to the charts, Kieran has actually drunk (through straws) more than he has chucked up. In spite of these problems he continues to ask for his milk throughout the day. Also, he did continue to clutch his NG tube continually throughout the day. He did not nap today but also did not play much. He enjoyed a new toy & later a new book but not as enthusiastically as he might have wished. |
Friday, September 15, Plus 3 |
We were greeted by a fantastically happy boy this morning. He was giggling, teasing, & wiggling around, eager to play. Then we noticed his NG tube was gone & were told it came out during the night, apparently the bandage did not hold it. They also said that if we managed to get 1000 ml. of milk down him during the day he would not have to have it inserted tonight. Kieran cooperated with us, but apparently was filled to the limit after only 450 ml. We're a bit apprehensive about how his night will go.
Another plus side today was that he only vomited once today and his diarrhea gave signs of subsiding. We noted that his vomit may have been caused, oddly enough, by the dosage of one of the anti-sickness medication he receives. It was being given in a single quick squirt, but the last time the nurses gave it as a drip over 30 minutes. This seemed to work much better as there was no reaction within minutes of the dose. We know that its very typical for him to have very good days followed by very bad days, but today was one of the good ones. |
| Saturday, September 16, Plus 4 |
Kieran was again clutching an NG tube this morning with tense fingers. His mommy was unable to care for him today due to a mild illness so he sat up, smiled and patiently cooperated with his Grandma. Unfortunately the tape holding his NG tube kept coming loose so he had his face re-taped twice during the morning. Once again notice was given that he needs to drink a litre of milk during the day or the tube would again be used at night. Even on the "normal" days we have figured he might not drink this much but still we tried. At least now that one of the medications is being infused over 30 minutes he did not give us back any digested material today.
After his nap, he was filled with glee to give his Daddy a gigantic hug! He had just arrived from Edinburgh. Then Frank pointed out that the NG tube was hanging down Kieran's side. Grandma sadly summoned a nurse who surveyed the situation and pulled the last 3 or 4 inches of the NG tube out. Kieran was unable to stop clenching his face at first but finally shifted his hand to protect his central line. Then he proceeded to enjoy sharing nearly every toy with his Daddy. |
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