The Wizard the wonderful Wizard of Riley's told Josh to close his eyes, click his heels together three times and say three times there is no place like home. He closed his eyes, clicked his heels together three times and said there is no place like home, there is no place like home, there is no place like home. And magically Josh was home!!!
It finally happened Josh returned home at 10:15 p.m. on Wednesday April 17, 1996. He came in like a stealth fighter pilot under the cover of darkness. As dad carried him from the van into the house his eyes had one of the happiest sparkles that we have ever witnessed. The first thing Josh saw was three balloons and a teddy bear given to him from the Red Cross chapter of Goshen congratulating him and welcoming him home. The next thing Josh asked to play some Gator Golf (this was one of his favorite Santa presents). Chaz and Josh played golf for about half an hour. Josh then decided to see all the changes to his house. There were many things different, yet everything he wanted was there for the taking. At 11:30 Josh and Chaz went to bed so they could start their new beginning as a united family once more tomorrow. As for Jason he woke up for about 15 minutes to wish him happiness and told Josh he was thrilled to have him home. They gave each other a smile and back to bed Jason went.
Josh had a good day at clinic yesterday. He has around 90,000 platelets, 4,100 white cells and AGC count of over 1,200!!! One of his medications (Cyclosporine) is at a high level count and has to be adjusted down. The level should be maintained around 200 and Josh's is running at a level of 400. This blood level will be monitored carefully over the next few days. Also the chest x-ray showed that Josh still has pneumonia in both lungs and is about the same as three weeks ago. Keep in mind that the word pneumonia is just a generic word for fluid on the lungs. We have no idea what form of fluid is there without conducting a biopsy and we are not about to do this at this time. Josh is loosing his eye brows at this time with his eye lashes to follow shortly. This will be trouble for him. He is again loosing more of his crown hair and is beginning to look bald up there.
Today Josh so far has eaten two chips and drank about 4 oz. of water. It's a start with a long way to go. He has been cut from 16 to 14 hours of steak in a bag. Now that he is home we will be working hard on getting him to eat. He is walking much better and continues to do physical therapy daily.
As for our house it was cleaned from top to bottom. Everything in our house was cleaned, carpets and furniture steamed cleaned, closets emptied and almost every nick knack packed away for a while. This could not have been done without the help of Kim's aunt, Cindy, who flew in from Nixa, Missouri. The staff at Riley's said that they have heard it all now. We are the first family to fly in a professional cleaner. She arranged many things including a new mattress for Josh's bed, pots and pans, and most of all a new Rainbow vacuum cleaner. This vacuum cleans with the use of water which prevents dust being released into the air. This was partially donated by Roger Maxwell of Aero-Tek located in South Bend. The building which was donated by Wolohan Lumber Company and Concord Little League is full of household belongings. This will make cleaning much easier. Again we thank Cindy for all her effort!!!
In closing today we would like to thank everyone all over the world (we received e-mail from as far away as Germany) for thinking and praying for Josh. We believe that with your help Josh has progressed very well. If everyone could say a prayer for Allison Berkley who is a 6 month old baby who will be under going a Bone Marrow Transplant without any radiation treatments starting this coming Monday. She is located within the same school district as Josh.
Sunday, April 14, 1996:
Yes we are alive. Sorry about the delay, but we have been rushing around trying to prepare for Josh's return. Josh is happy at his new temporary home, the Ronald McDonald House. Josh was seen in clinic this past Friday and will be returning Monday and Wednesday. On Wednesday he is hoping to hear the magic words... There is no place like Home, so go young man be on your way. We hope to have Josh home Thursday around 2:00 p.m.
Josh's blood counts are about the same as last weeks with 1,400 white cells and ACG of 1,030. At this point Josh has begun eating micro-bites of food. Josh has no taste buds as they were burned off by the radiation treatments so nothing tastes good anymore. We hope that within 30 days he will be back eating. At this point he is still receiving what we refer to as steak in a bag. The cost of this dine in meal is $900 a day. That's right $900 a day, (we thought our dining out habits were expensive). Mom and dad mix some additives and drugs into the bag and feed him intravenously from 4:00 p.m. to 8:00 a.m. everyday. He is also still taking some medications by mouth twice a day. As for his pneumonia it was still there Friday and a follow up x-ray is scheduled for Wednesday. He is antibiotic free at this time and it should hopefully stay this way. Josh is doing physical therapy with mom and dad every day and stretching twice a day. He still has hemorrhages in both eyes and has lost just a little more hair. Josh is very excited about coming home this week as well he should be.
Mom is spending the week with Josh as dad helps to clean the house. We are doing things to our house that most people would not even consider. This Tuesday night dad will be the key note speaker at a Red Cross dinner party sharing Josh's story to about 350 people. Good luck dad.
Many people have asked us about what really happened down there at Riley's. What we would like to say regarding this matter is that we did sugar coat Josh's Update Page considerably. We are adding a new page consisting of about two printed pages to aid in the support and knowledge for parents who will be experiencing a bone marrow transplant or any form of childhood cancer. We will share some of our personal insights, advice, and beliefs that might help to pull them through this gut wrenching experience. This was not as easy as it may have appeared for the outsider reading Josh's Update Page. We should have this project completed by May 1, 1996.
Thursday, April 11, 1996:
Out of the hospital!!! Wednesday was an exciting day as Josh was released from the hospital twenty-seven days after the transplant and 37 days after he was admitted. It took mom and dad several trips with little red wagons loaded with all the gifts he received. Then Josh walked to the doors of the stem cell unit and broke through the string stretched across the hall with a sign that read "Congratulations Josh!" marking the end of a long marathon. His nurse, Lisa, (who had made the sign) gave us all hugs and it was a joyful but teary good-bye. Josh is now staying in an apartment in the Ronald McDonald House just a few blocks away from Riley.
Before being released Josh received a very special gift from the transplant team of doctors and nurses. It was a sterling silver pin in the shape of a shooting star specially made for bone marrow and stem cell transplant patients at Riley Children's Hospital. It was engraved with the number "43", signifying that Josh is the 43rd transplant patient to be released from the stem cell unit since it was opened a couple of years ago. He is a very courageous and lucky little boy.
Josh is still making progress and will return to the stem cell outpatient clinic on Friday morning for a checkup. He will probably be seen again on Monday and Wednesday of the next week, and we hope to have him home soon after. Josh's dad is with him now and mom will be there Friday night. Dad will then return to Elkhart Saturday night and will begin to prepare the house for Josh's arrival. With the help of Josh's aunt Cindy, we hope to have our home ready for Josh's homecoming by the end of next week.
Tuesday, April 9, 1996:
Tomorrow Josh gets to speak to Oz about finding his way back home. He continues to think there's no place like home, there's no place like home, there's no place like home, We shall see if we can get out of here tomorrow and over to the Ronald McDonald House.
Josh's counts remain constant at this point and his spirits are rising. Josh is not hooked up on any kind of pumps, lines, or monitors this evening. Freedom to roam around without getting tangled up in one thing or another. Not much to talk about except that we are all ready to go home. All anyone needs to do is to spend some time here on this unit to realize how lucky Josh really is, There are six rooms here and three of the rooms have been occupied by the same child for over 45 days and they see no light at the end of the tunnel. Another family from South Bend has been here since December 26, 1995. Josh has went by the book the whole way with little deviation and the team of doctors are thrilled. Again it has been mentioned that the reason for Josh's progress may be in the magical card from Virginia.
Early this evening mom and dad were trained on how to do home care for Josh. We will be required to feed Josh intravenously, draw blood for laboratory work-up, nutritional care and generalized nursing skills. Josh shall become dependent upon us for all of his needs. Not to beat a dead horse, but the staff is very confident in mom's and dad's ability to care for him. This is one of the main contributing factors for Josh's early release.
Dan Cocanower has been a life saver the past few months. His contributions to Josh can not be overstated enough. He has performed most of the leg work arranging the delivery of a storage building and installation of a central air conditioner. Both of these were required in order for Josh to return home. Dad has emptied all closets and packed some of our big items in the house. Most of our nick knack's will be packed this weekend and stored until the doctors give us the word that some of the restrictions are lifted. The carpets and furniture will be cleaned next Tuesday and the disinfecting of the house finished by Thursday night, This is a MAJOR project.
Sunday, April 7, 1996:
Happy Easter!!! This morning Josh woke to find he had a special visitor in the night. The Easter Bunny had hidden eggs filled with dollars all over his room! Josh said the Easter Bunny must be smart because he put the money in plastic bags inside the eggs. He must have known that Josh couldn't touch the money. Josh also received a stuffed bunny and Peter Rabbit book that has buttons to push that make sounds. One of the nurses bought him a basketball and hoop that we mounted on his closet door. He whipped mom's butt in a game of horse. This afternoon he went out into the hall and whipped the nurse's butt in a game of pig with the basketball. He also rode his bike around the hallway and was a little more steady this time. Josh had a follow-up chest x-ray today that showed the pneumonia is improving. Last night the nurses took the oxygen tent out of his room because he hadn't needed it for three days. He is still needing morphine for the pain in his stomach, about every four to six hours. Also, his "steak-in-a-bag" has been decreased to an 18 hour drip so he was completely off IV for six hours today.
Saturday, April 6, 1996:
Friday was a big day for Josh because he had many visitors. One visitor was very special to Josh. She is a friend of mom's who had a transplant here at Riley Children's Hospital several years ago. We think it was very good for Josh to meet her and see how good she looked and that she is cured now. He also enjoyed all of his aunts, uncle, and grandparents. He has been going out of his room now and playing horse or riding the bike they have for him, and he was happy to show off a little for everyone.
Saturday they took him off the morphine drip. He now gets a dose every four hours and continues to get benedryl and other medications for nausea. In a day or two the morphine will be down to what they call PRN which means as needed. He is beginning to take his medication by mouth and his mouth and throat are healing nicely. Josh is also continuing to get stronger with physical therapy.
Dad and the boys are now home and dad is going to begin getting the cars and house ready for Josh. We are still scheduled for release to the Ronald McDonald House on Wednesday, day 27 post-transplant, which is one day earlier than was expected at the beginning of all of this. Then, depending on how often Josh will need blood and/or platelet infusions we hope to have Josh home on April 20. That will make 48 total days in Indy. Evidently there has been some confusion about the initial expectations. Many people were under the impression that Josh would be in the hospital for 100 days. Day 100 post-transplant is an important milestone for transplant patients but this is not the average number of days in the hospital. While Josh is doing very well now, he has been through a lot. According to the doctors his progress has been no better or no worse than they expect of most patients. There are several reasons he is able to come home in a couple of weeks. He is off all antibiotics, drinking liquids, taking medication by mouth, his counts are good, and we hope to have him off morphine by Wednesday. Even more important is that he has shown no signs of Graft vs Host Disease (GVHD). However, this can show up anywhere from days to months after transplant and he will continue to be monitored for this. Another reason he may come home in two weeks is that we are able to draw labs at home which can be taken to Memorial Hospital in South Bend, and we can feed him through an IV at home. We will be bringing Josh back to Indy for checkups, blood, etc. for quite a while. At first it will be twice a week, then once a wee, twice a month, and so on.
When Josh comes home he will be able to have limited visitation. This means only a couple people at a time, wearing mask, foot wear and rubber gloves, brief visits and NO CHILDREN VISITORS. For those of you who may decide to visit, remember that "good" is a relative term. Although Josh looks good to us, he is a long way from being back to normal and does not look like he used to . It will take time.
Thursday, April 4, 1996:
Our 32nd day at Riley's and Josh's 21st day post transplant. His counts continue to recover nicely with white cell counts of 2,200 (normal is 5,000-17,000) and his ACG count is at 834 (normal is greater than 1,000). The strict restrictions on visitation have been lifted. Josh may have two visitors at a time. They must scrub and wear foot covers, mask and gloves. No children will be allowed to visit at this time, only adults.
Physical Therapy maybe the hardest part of Josh's day any more. He has become very tight from laying in bed for five weeks. This will be an aspect of his recovery that will take a lot of effort on his part. Josh is again scheduled for a platelet infusion because he continues to throw up blood and not hold them for any length of time. We began putting artificial tears in his eyes as his ability to produce tears is failing. Another aspect of this procedure is that we are unable to clip finger and toe nails because of the threat of infection. Josh's have grown quite long and are starting to bother him.
Last night Josh ended up with three Bingos and 2 Bingo Pictionaries. Dad spoke to the Riley's TV station about how much he enjoys Bingo and they stated that they would like to come up to film Josh. Back on TV again. Also the family will be up tonight and the boys will be playing games tomorrow. Kim will be staying through Wednesday and dad will return on Tuesday to clean the suite at Ronald McDonald's for Josh to move into. If Josh can start taking his medications by mouth he will be over there Wednesday. He is moving in the right direction. We might get home within a couple of weeks. The doctors told us that they feel very confident in our ability to care for Josh and that they would be willing to release him early because of this. A nice pat on the back for mom and dad. We would still have to travel down here twice a week, but Josh would be home!!! We will keep you posted on this issue. We will only be posting updates every other day from here on out, but please continue to check in on Joshua's Update Page.
Wednesday, April 3, 1996:
Today is Josh's day to tell what he did in his own words. I went outside yesterday and I played basketball out there for a little while. I kind of missed some shots and after I was done I walked down to a door and then I went back to my room. And today I'm going to do it again, but today it is going to be a little different. We are going to play horse me and my dad. Dad is going to loose I think. I might loose, but you never know it is just fun. That's all.
Josh received another platelet infusion today and we have concluded that this is what will hold us up from going home. The doctors would like to see Josh only getting two infusions a week in order for him to go home. His blood counts rose a little today and his red cells are holding their own. He continues to sip water and in two days we are going to start working on him taking his meds by mouth. This is going to be a challenge!!! Josh had his PCA pump (self given morphine) removed from his room and the drip has been steadily decreased. Josh has come a long way in the last 10 days, but what we must remember he has a long way to go. Oh yes I almost forgot, an Easter egg hunt is being planned by mom, dad and the doctors. We will be performing a little trickery in order to get Josh out of the room first thing Sunday morning.
Tuesday, April 2, 1996:
Finally on day nineteen Josh was able to leave his room and walk the hallways of the Stem Cell Unit. Josh was required to wear protective clothing while he was out, but he did not mind. He enjoyed a game of hoops (kicked dad's butt) and he did some stretching. His ACG was 555 and a white cell count of 1500. Josh received another platelet infusion late last night after throwing up blood and is scheduled to receive another one tonight. Josh also spent the night under the oxygen tent and it maybe the same tonight if his Bi-Ox levels drop. His morphine drip is being cut back about every six hours by .2 ml. They must slowly wean him off of the drip because this is one of the major markers in order for Josh to be released from the Stem Cell Unit.
His doctors are thrilled with his progress and we were told today we would be staying two more weeks in the Stem Cell Unit. The doctors all met today and decided it was best not to move Josh to the Oncology side, but rather keep their diamond in the rough here. Josh should be released to the Ronald McDonald House around April 12th and we are very uncertain how long our stay there will be. What ever it is we will be one step closer to the land of Oz.
Today Josh had four platelet donors from Crowe Chizek stop by to wish him well. They brought up some gifts and dinner for dad. Josh had dad playing catch with a dolphin and velcro mitts most of the day. We are very hopeful that by this weekend visitation restrictions will be lifted somewhat. We will let you know because Josh would love to show you his new low and tight hair dew!!!
Monday, April 1, 1996:
News Flash: Syracuse wins the NCAA, Syracuse wins the NCAA, Syracuse wins the NCAA, April Fools!!! The way our luck goes we will eat those words tomorrow.
Kim and the boys have left and Josh is visiting Z land. The boys wore him out today. Jason and Josh played two new games on the computer for about four hours and they had a great time laughing and carrying on!!! Chaz spent most of his weekend running around like the wild man he is. We had a great family day and this trend can continue as far as we are concerned.
Josh's ACG count slipped today from 832 yesterday to 550 today. This is very good considering his doctors were not expecting these kind of numbers till the end of the week. His doctors suggested if Josh can maintain this pace he might be out of the Stem Cell Unit by the end of the week. Josh could be released to the Oncology side of the unit with some restrictions lifted. This is GREAT NEWS!!! If his ACG is above 500 tomorrow he would like to play some basketball in the hallway outside his room and he said he is going to kick dads butt in a game of horse. Josh spiked a fever last night, but managed to fight it off without the aid of antibiotics. With a fever Josh received another chest x-ray and some more blood cultures. The x-ray showed the pneumonia being stable. The doctors warned us that he might have to be out back onto some of the antibiotics and not to be alarmed. He continues to sip water throughout the day and is continually looking better. Tomorrow is a new day with more adventures down the yellow brick road.
Sunday, March 31, 1996:
Day seventeen and the fuzz head has 1300 white cells. This is the first day his ACG was over 500 (it was 832). Today was another day and we realize that there are still some bumps along the yellow brick road. Josh has hemorrhaged in his right eye and the hemorrhage in his left eye is diminishing. The doctors assured us these are temporary and will not diminish his vision. Josh received two infusions of platelets in the last twelve hours with no major reactions. He has spiked another fever with the second infusion and if it doesn't come down., back onto antibiotics he goes. Josh's appearance is improving on the hour. Josh was sitting in the chair today for a few hours cracking jokes and smiling with his brothers. Josh has seen the grim reaper and told him to BLOW!!!
Dad returned from Elkhart with the Little League mission accomplished. Mom and the two boys will be returning to Elkhart tomorrow afternoon and shall be missed. Mom and dad are going out for dinner and a quick kiss.
Saturday, March 30, 1996:
Day sixteen and things are just getting better and better. Today Josh's doctors took away all antibiotics! this was a big step towards the day he will be released from the hospital. We can finally begin to see the light at the end of the tunnel! Josh has still been a little nauseated, especially since he is drinking water now. His stomach is also cramping from the water because it is not used to having anything in it. Josh's counts went way up today. His AGC was 441 and his white blood cell count was 690. If he can maintain an AGC of 500 or more for three days in a row he may be able to go out of his room and walk around a little.
Josh had a reaction to platelets early this evening and got the "shake and bake". He was chilling and running a temp of about 102F and he broke out in a rash. This happened soon after they began the infusion and they stopped infusing right away. Of course with fever comes cultures! Again they took blood cultures from each central line catheter just to be safe. We believe the fever is from the reaction and don't expect any positive results from the cultures. The platelets he received were from a mix of random donors but they expect to get a unit in from a single donor soon. If his fever breaks we will try again!
Josh's dad went home last night to finish up some of his duties with the Concord Little League. He will return tomorrow afternoon. Josh's brothers have been staying at the Ronald McDonald House and will return home with their mom Monday night. Josh had some more visitors from Elkhart today. Sid and Lori Sherwood stopped by to see him and added an IU hat to his collection. IU has been Josh's favorite team since he was here in December when Charlie Miller and Richard Mandeville came into his room to visit, so of course this is his new favorite hat now. They also brought a new teddy bear for him and we are trying to find out if we can sterilize it so we can bring it in the room.
Friday, March 29, 1996:
Day fifteen and Josh continues to improve. He has had no fever for another day and so the doctors have taken away one of the five antibiotics plus reduced the anti-fungal to half his normal dose. He also began drinking liquids today. He was able to keep a few sips of water down and decided to try juice and Pepsi. The juice did not taste good to him (his taste buds have not recovered), and the Pepsi wouldn't stay down. After that he decided to just stick to water. That is fine with us. The doctors have given us some criteria for Josh to be released from the hospital and one was that he must be able to drink liquids. It doesn't matter what kind of liquid as long as he is drinking it, so water is a s good as anything. Other criteria is that he is off all antibiotics and he has to be off all pain medication. He also has to maintain a level of white blood cells of at least 1,000.
Josh continues to receive platelets every day and is receiving medication for fluid retention. He suffered a minor nose bleed in the middle of the night that was probably caused by the oxygen tubes in his nose. So tonight he is "camping out". Because his Bi-ox still drops a little when he sleeps, it was either and oxygen mask or an oxygen tent. He wasn't pleased with either but chose the tent. The lung culture came back negative so we don't know if the pneumonia is bacterial or viral. They could take a biopsy of his lung to determine this but since it seems to be getting better we are not going to do that.
Josh's brothers are here to visit and play Super Nintendo with him. They were very pleased to see the improvement since last weekend when Josh was about at his lowest. Although this has been hard on all of us, Jason and Chaz seem to be coping very well. Jason even got 5 A's on his report card this week! Josh is getting quite a collection of cards on his wall and enjoys them all. He also had a visitor all the way from Las Vegas! His Aunt Angie is here (with Grandma) and it has been over two years since Josh has seen her. One last note. It seems we forgot to update everyone on Josh's Bingo streak. He continued his perfect score Wednesday night with another three Bingo's and, as an added bonus, he even guessed four Pictionaries (well, at least he gave the right answer over the phone with a little help from dad)!
Thursday, March 28, 1996:
Day fourteen with the magical get-well card Josh received Tuesday working like a charm. What magical card you may ask? Where may I find this magical card you ask? Well let me tell you that his great aunt Anita mailed him this magical card from Virginia and it can be found only under Josh's pillow. The card's power rests in the mind of a little boy named Josh. It reads like this. This is a magic get-well card! Just put it under your pillow at night before you go to sleep and when you wake up you'll be on full day closer to being well!!! His doctors think that all the children up here need this card. Josh had 3 of his former teachers from Calvary Kiddie Kollege come up to wish him well today through the windows.
Josh's white cell count is down a little today, but that is to be expected. At this point he has had a good day and we hope that this trend will continue. He had another chest x-ray this morning which revealed that the pneumonia has stabilized. His doctors even think that it has decreased just a bit. The results of the lung culture have not been received yet and we will post these tomorrow. Josh has also not ran a fever for almost 24 hours and this is another trend that we hop continues. Josh is bearing more weight on his left hip which indicates that if he was bleeding there it has stopped. His right heel is still discolored and irritated. Josh received another infusion of platelets today and may receive more this evening. He is really eating up the platelets at this point. Josh has picked up several pounds in the last 48 hours so the doctors are consolidating medications to help him from retaining so much fluid in his tissues.
Kim and the boys are on there way down to spend a long weekend and Josh is very excited. I understand that Chaz is just as excited as Josh. the teachers from Calvary told dad today that Chaz refused to play outside this week because he didn't want to get sick. Chaz informed them that if he gets sick he could not see Josh.
Wednesday, March 27, 1996:
As bad of a day as we had yesterday today, day thirteen, is a GREAT DAY!!! For the first time since who knows when Josh did not run a fever over 101.6F last night. As a matter of fact as we speak his temperature is at 99.4F. Josh has smiled several times and has even cracked some jokes. Josh had a new physical therapist today and after the session he told her that he liked her better than his old one. She laughed and told Josh that next time she would have to be harder on him then. He said if she was going to be harder he wanted his old therapist back. He is loving life today.
Josh is able to bear some weight on his left hip today, but now his right heel is hurting again. If we go through what we did in January I will personally throw myself to the floor and cry like a baby. We had one positive bacterial culture from a stool sample taken 3 days ago. The doctors are not concerned with this because they have Josh well covered with antibiotics for this. Josh has made it 26 hours with no visible bleeding which is a nice change of pace. He received another platelet infusion today and his white blood cell counts have dropped to 270 as expected. Josh has to continue having blow by oxygen while he sleeps until further notice and the oxygen tent could be used. Hair patrol reports that all long hair has fallen out and all that is left is a fuzz head. Josh is happy about it!!!
Tuesday, March 26, 1996:
Josh continues to enjoy having his mail read to him. Today he received a package with some Dallas Cowboy attire sent to him from the family of Jennifer Yeakley. We have a link to Jennifer's home page that may be of interest to you. This family has helped tremendously preparing us fro this whole process. Josh's hair is still falling out, but at a slower rate and he still enjoys looking at himself in the mirror. I wish I could say the same, but frankly I scare myself in the mirror. We had a storage building delivered to our house today and was told that the central air is on the way, so we can begin preparing our house for Josh's return. This was arranged by Dan Cocanower and Gary Maust, president of Dalin Construction.
Day twelve post transplant with many happenings in the last 12 hours. The issue of infection continues to be monitored. Last evening some urine was sent off to be cultured and should have results within 72 hours. Joshua continues to spike fevers every night, but last night his temperature peaked at 103.6F. As the late evening progressed he began mentioning his left leg hurting. By 5:00 a.m. he was unable to put any kind of pressure on it. We rushed him to x-ray to examine his left hip to insure that he suffered no trauma. The other concern is that he may be bleeding into his thigh muscle. This situation is being monitored closely at the present time. Josh's Bi-Ox reading (oxygen carried to his extremities) continues to fall, so a blow by oxygen system has been placed on his bed. This is very similar to a humidifier in that it blows oxygen by his face thus forcing oxygen in at every breathe. An oxygen tent was also brought into his room on a stand by basis. It will be used if needed.
Josh had a major nose bleed this morning lasting for almost 30 minutes. He lost what seemed to be a large amount of blood. In the last 12 hours Josh has received 3 platelet infusions and the issue of related platelet donation has been mentioned. Josh is not getting a big boost from some of the platelet infusions so mom and dad could help out in this regard. His team of doctors want to hold off on related donations for a last resort, because once we start we might not be able to stop for a while. We call it the Lays potato chip effect!!!
Monday, March 25, 1996:
AGC 250!!! Will Josh ever have anything normal happen for him? Why does everything have to be rare or very rare? Well for a change this is fine with mom and dad to have cells so early. We don't have much time today, because we are busy clicking our heels together and saying there's no place like home, there's no place like home, there's no place like home.
Josh had a CAT scan this morning that showed the pneumonia has not got any worse. We had Josh spit a small sample of the fluids from his lungs into a sterile cup to be cultured. It will take up to 72 hours to receive the results. Josh received another infusion of platelets today and will continue to receive them about every 24 hours for a while. He has a small hemorrhage in his left eye and also has hemorrhaged somewhere in his rectum region. We don't want to give any false hopes about his condition. The worst part of this process is here and we hope that this weekend will be a better one. Yes, Josh has reached the edge of death's bed, but he is ready to come back to the living.
Sunday, March 24, 1996:
AGC 158!!! Day ten and hopefully we have the first sign of engraftment. Josh's white blood cell count is 220 with an AGC of 158. This is very early considering the average is between 14 and 25 days post-transplant before seeing white blood cells, but we are not complaining! These numbers may be back to zero tomorrow and they will probably fluctuate for several days. With engraftment comes Graft vs Host Disease (GVHD). We would like to see a small amount of this because there is a graft vs leukemia effect with GVHD, which means the new cells would attack any leukemia cells that may still be in Josh's body. The other side is that the new cells recognize Josh's body as being foreign and they will attack (or reject) Josh. Josh has already received periodic doses of methotrexate for GVHD and will continue with treatments to try and control it.
Josh's temperature has not come down all weekend and has been as high as 103.2. Because of this his doctor is going ahead and scheduling a CAT scan for Monday. It will give a better picture of his lungs and also his abdomen and pelvic area so the doctor can determine if there are nay other possible infections going on. His Bi-Ox improved yesterday and he no longer needs oxygen at this point. He did have a couple of severe nose bleeds yesterday and required another unit of platelets. He will be getting a unit of whole blood today as his counts indicated he was a little anemic this morning. Also, the "goals" for Josh to start moving around and doing things are out the window. I'm not sure how this got started, but his doctors agree he is not able and they are comfortable with the amount of sleep he is requiring at this time. The only thing they ask is that he take some deep breaths every couple of hours to expand his lungs. Along with the five antibiotics he is on, this will help clear up his pneumonia.
Saturday, March 23, 1996:
Day nine with the whole family here at Riley's laughing and carrying on the Eaton way!!! Everyone was thrilled to be together even if it was for only a short time. Jason and Chaz visited with Josh, played on the computer, taught Josh some new secrets on his new nintendo game (Toy Story) and even watched a movie. I wish that I could say that Josh was awake for all of this, but that would just be a dream. At this point we are satisfied with dreams because that is what keeps us going. When Josh was awake we could see the joy in his eyes to have seen his brothers and even more joy for his brothers to have seen him. Josh even managed to send an email to his teacher Mrs. Oyer and fellow classmates. We must also admit that for Josh the best medicine in the world is to see his family together.
Well now down to the business of the day. Last night Josh received an oxygen tube through his nose to help with his Bi-Ox reading and shall continue to depend on oxygen until his lungs heal. What everyone needs to remember is that Josh's body is not only immune depressed, but it has taken a severe beating from the radiation and chemotherapy. Another chest x-ray was performed this morning with similar results. If by Monday morning he is still spiking a high fever and his lungs sound poor he will have bought himself a cat scan. The cat scan will take a better picture of his lungs that will help the doctors to make some more decisions on his treatment course. Josh will receive another infusion of platelets later this afternoon because he continues to have nose bleeds and throwing up blood. At the pace that he is sleeping today it looks like only 2-3 hours will be spent awake. Josh continues to lose his hair at an alarming rate. All that is left is on his crown and a thin fuzz like appearance around the sides. The next thing to fall out will be his eye brows and eye lashes. This will cause some problems keeping small dust particles and debris out of his eyes.
Friday, March 22, 1996:
Day eight of the new beginning and Josh has hit a bump in the road. Late Yesterday afternoon Josh spiked a fever that cost him an x-ray and more blood cultures. We received the results of the x-ray early in the evening and Josh has pneumonia in both lungs. His temperature peaked at 102.8 F. last night before we started his new antibiotic. It is now holding steady around 101.2 F. His team of doctors explained this has happened before and they are very confident they will handle it this time. Josh has had a bad case of diarrhea that made sleeping difficult last night. Josh is still performing mouth care twice a day, but it has become increasingly painful to do so. Josh's hair has almost all fallen out, except at the crown of his head. There is a thin layer remaining around his sides and in front.
Josh's physical therapist has set two goals for him to attain. Josh is to stand up and play beach ball 2 1/2 minutes and to walk around the bed once a day. He is to sit up in a chair for 20 minutes reading, drawing or painting twice a day. If Josh can reach his goals each day he will receive a sticker on his sticker board. We are still under negotiation for what he gets for completing the whole project. Josh continues to have his email read to him and enjoys all the cards. Josh received an email from his teacher Mrs. Oyer and few of his fellow students. He was thrilled to hear from them and said when he is able to talk he would like to dictate a letter to them. I have forgotten to mention that on Wednesday evening on Riley's TV Josh plays BINGO. Since our arrival Josh has had a bingo in every game.
Thursday, March 21, 1996:
Josh is now sleeping between 16 to 18 hours a day. His team of doctors are not concerned with him sleeping this much. It is in the best interest of Josh for him to rest and to let his body figure out what is going on now. Josh is in the midst of being at his low point and will probably stay at this point until he shows signs of engraftment. He continues to spike a fever every night with blood cultures to follow. Still at this point there are no signs of infection or pneumonia. This morning there has been some conversation concerning his Bi-Ox reading being to low. This reading relates to the amount of oxygen being carried to his extremities. If the reading continues to be low Josh will need some oxygen to help correct this problem. Today he will be receiving infusions of platelets and packed red blood cells that will help boost his blood counts. The hair patrol crew is staying busy. The hair on the sides of Josh's head especially where he lies on the pillow are almost gone. He also has one small bald spot on the top of his head. One of the first things that Josh does when he wakes up is to look in the mirror at his hair.
Josh had a couple of his Clinic B, (Riley's outpatient cancer clinic) friends Dr. Breitfeld and Sharon up to check in on his progress. They are pleased with how well he is doing. Also Allison Berkley, (a baby from Elkhart within the same school district) was in clinic today and her father came up to wish us well.
Wednesday, March 20, 1996:
Day six post-transplant and everything is normal at this stage of the process. In the last 24 hours Josh's hair has continued to fall out at an increasing pace. We are changing his bed sheets and pillow case constantly. Josh tried to wear a surgical cap to catch the hair, but it was uncomfortable for him. Mom and dad have taken on a new duty -- hair patrol. Josh has become very handy with his Yankauer suction tube. He sucks on it like a lollipop and it has helped a lot in keeping his air way clear from the mucositis. He still has a difficult time sleeping comfortably because he has no way of cleaning out the mucous except to throw up. Josh has become one of the nurses favorite patients or so it seems to us (are we bias or what). With all the pains, sores, blood and weakness Josh can always manage to say thank you, please and return a smile to all.
Last night Josh was out of bed for the first time since day -3 transplant. Josh received a card and some Easter decorations from the Gipson family. Josh hung all his new decorations on the windows of his room. He was so happy to be up doing something on his own. It was very hard for mom and dad to hold back our emotions. To you it may seem like simple tasks to walk, to touch, to talk, but for our son Josh it gave him so much joy. One of the best lessons that we have learned from our son is to live for today and tomorrow will take care of itself.
Tuesday, March 19, 1996:
Day five post-transplant and not much news except that the weather outside is frightful. Everyone think SPRING! Josh continues to lose his hair. He was upset that we forgot his hats so we bought him a new one from the gift shop. He will be receiving another infusion of platelets this afternoon, so it looks like he may need them every 1 1/2 to 2 days. He continues to spike a fever every day and the nurses draw blood cultures each time, but so far no infections have been detected. He has also had his morphine steadily increased as his mouth, throat, stomach, etc. continue to ulcerate.
Monday, March 18, 1996:
Hair on the pillow! Just a few strands, but it looks like it is beginning to fall out. Everything is going as well as can be expected. Josh's temperature continues to hover around 99 - 100 F. He received his second infusion of platelets last night after vomiting a large amount of blood. Things are not all doom and gloom here. We still have things to laugh about. He has been itching some from the morphine. At about 3:00 a.m. this morning he asked the nurse if she gave him fleas. He called her back to his room an hour later and told her to get him some bug spray to kill the fleas. We believe the morphine is working!
Sunday, March 17, 1996:
Josh still has a full head of hair!!! Is it ever going to fall out? Day three and Joshua put in a rough night. He was kept awake most of the night from vomiting. The doctors have increased his morphine to help keep him comfortable. They told us they will do everything they can to keep the pain from overwhelming him. We think they have done a wonderful job of this!!! Josh's mucous membranes have almost completely broken down now and many ulcerations have occurred. Josh continues to do his mouth care twice a day which really has really impressed the nurses. Many patients at this point would be refusing to continue with their mouth care. He is also talking a little when he is able. Josh received another chest X-ray today. The results showed no more signs of pneumonia. His temperature is still around 100 F., but is on the way down.
Chaz left today to be reunited with his brother Jason at the Phelps household. Chaz was almost back to normal in spirits, but was still having difficulty walking. He walks like he just got off a horse that he has been riding for two weeks!!! It will soon be time for Kim to return to work. She will be traveling to Fort Wayne this Friday to attend a seminar and shall return to the office a week from Monday. She wants to have the other two boys back under our own roof by next Wednesday night. At that point we will start alternating out time at the hospital. Chuck will most likely be staying weekdays at Riley's with Josh and Kim will stay on the weekends and occasionally on weekdays.
I would like to take this opportunity to thank my wife's employer, Crowe Chizek and Company, for offering her the time she needed to be with her son. They worked out a program for her co-workers to donate vacation days, and she received enough extra days to be able to spend time with Josh without having to worry about losing income. This whole difficult process has been more tolerable for my family by their contributions. We would also like to thank Calvary Kiddie Kollege for offering to provide expense free daycare for Chaz while Josh is recovering here in the hospital.
Saturday, March 16, 1996:
Josh spiked a fever yesterday and his chest X-ray showed signs of pneumonia. His doctor is treating him for infection and pneumonia as a precaution, but won't know if it is either without the results of the blood culture and a follow up X-ray Sunday. He said it may just be from the mucositis and if so, is quite normal. They have increased his morphine drip for the fourth time and brought in a PCA pump so he can push a button to get an extra boost of morphine as he needs it. It allows him a boost every twenty minutes and locks the button out in between so he doesn't give himself to much. This seems to have made him more comfortable. The doctors explained to us that the next few weeks for Josh will be lost weeks. In other words, Josh will not be able to recall much of what happens as he is pretty well out of it from the medications.
Chaz is getting around much better and should be at about 80 percent tomorrow. Josh and Chaz played nintendo and watched some movies together for about three hours. That is about all Josh can take at this point. Chaz had a great time with Josh!!!
Jason could not come down this weekend because he has a small cold. So instead of being bored here, we have been informed that he will be going bowling and to the movie theater this weekend. We don't think that he minded all that much!!!
Friday, March 15, 1996:
Joshua has not spoken since last night due to the deterioration of his mouth and throat. Josh is now using a vacuum pump, (similar to what you would use at the dentist to remove liquids) to remove the mucositis from his mouth. He has only thrown up a few times today, but he has spiked a fever. A chest X-ray has been taken and blood cultures ordered to help diagnose the situation. Today he received a platelet infusion. so now we will see how often he will need them. Josh is also back seeing his physical therapist on a weekly basis to help keep his muscles in optimal condition. One of Josh's favorite nurses, Dena, from clinic B where he was seen over the last few months came up to help cheer him up.
Chaz was seen in clinic today where he got the old two thumbs up. He was unable to walk for the first few hours today, but has walked a steps this evening. He is still uncomfortable, but starting to come around. By tomorrow he will be running the grandparents all over the hospital. Chaz did a great job yesterday. Mom, dad and Josh are very proud of him!!!
They all said, follow the yellow brick road, follow the yellow brick road, follow the yellow brick road and we did. On our way we sang, we're off to see the wizard the wonderful wizard of Riley's and we saw him!!! Now the wizard has spoken and he told Josh to keep thinking, there is no place like home, there is no place like home, there is no place like home. Let us wait and see.
Now to a more serious side of life. 6:30 a.m.: Chaz is VERY UNSURE this morning about this whole idea of having to be put to sleep in order to help Josh. Kim did a wonderful job of keeping Chaz calm before going into surgery. Chaz was given some oral sedation medicine about 15 minutes prior to leaving Kim for surgery. When Chaz left Kim she gave him the two thumbs up sign and he replied rather drunkenly back with the two thumbs up sign and a smile. 9:00 a.m.: Chaz is finished in surgery and has been moved to recovery where he will stay for a few hours. The team of doctors took a total of 375 cc of Chaz's marrow and have sent it off to have all of the bone chips and some fatty tissue filtered off. The marrow should be up into Josh's room by 11:30 a.m. 2:30 p.m.: Chaz has been seen in the stem cell outpatient clinic and released to the McDonald house for the day to recover. At this point he is very sore, but all in all he is fine. He is to return to the clinic tomorrow around noon to be seen for the final time. Chaz at this point does not understand how important of a role he has played in Josh's life, but as he gets older he will learn that he has given a part of himself for his brother to live. One day in the future we believe the boys will become even closer and share many stories about their adventure down the yellow brick road.
Josh put in a better night only throwing up 3 times. He has started to receive morphine on an as needed basis and this seems to be helping him deal with the pain at this time. His mouth and his stomach are ready to ulcerate at any time which was expected. He continues to steadily get worse as the day progresses and the staff here is doing a wonderful job of keeping him comfortable. Josh received Chaz's marrow at 11:00 a.m. and it is really anti-climatic. It will take about 2-4 hours for all of the marrow to be put into Josh and the marrow should find its way to his empty bones in about 4 hours after infusion. Now all that is left is to wait and see. We may see some signs of engraftment in 10-21 days post transplant. The next few days Josh will continue to deteriorate and we will keep on praying.
We must admit as parents this is the hardest part of this process is to watch the slow deterioration of our son. We also understand that this is what must be done in order to rid Josh of this disease, even though it does not make it any easier. We thank God that this day is over and may God continue to watch over our family.
Wednesday, March 13, 1996:
Chaz has arrived today and has performed all pre-transplant work-up. He will spend tonight with his mother at the Ronald McDonald House and be admitted for surgery tomorrow morning at 6:30 a.m. Chaz's bone marrow should be given to Joshua early in the afternoon intravenously. Chaz should be back over to the house sometime by mid afternoon resting with his mother and grandparents. Chuck will spend the day taking care of Josh.
All of Josh's counts have dropped to zero as expected and this evening he is receiving packed red blood cells and may need some platelets tomorrow. Today was a day of rest for Josh and he needed it. Josh had a rough 24 hours of vomiting the mucousitis from the breakdown of his mouth and digestive tract. This break down should continue over the next several days. We will try to have this page updated by 3:00 p.m. tomorrow to let everyone know how Josh and Chaz are doing. May God bless our children as their lives will be forever changed tomorrow.
Tuesday, March 12, 1996:
Everything is going according to plan. Today will be the last dose of chemotherapy for Josh with a day of rest tomorrow. Josh's white cell count is near zero as expected. His hemoglobin, hematocrit, platelets, etc. are also getting low. He is starting to feel bad and has been vomiting some from the mucositis caused by the radiation and chemo. He can still swallow and has not gotten any mouth sores. These are expected in the next day or two and may spread throughout his digestive tract. He will be getting morphine as needed for the pain. Josh's spirits are good and he still enjoys playing nintendo and other games. He is a little disappointed that he has not lost his hair. He received so many new hats and would like to wear them but has been waiting for his hair to fall out. The doctors say that radiation is the acid test and it should be any day now. We'll see! We thank everyone for their thoughts and prayers.
Sunday, March 10, 1996:
Our first week hare at the Stem Cell Transplant Unit has gone very well. Joshua has handled this whole situation like a real trooper. His doctors and nurses are more and more impressed with his spirits and manner everyday. This weekend Chuck traveled north to bring Jason down for the weekend and Grandma Eaton brought Chaz over on Sunday. Joshua's Uncle Richard also came to visit. It was really great to have the family back together at our new home away from home!!! Josh's kindergarten teacher, Mrs. Shaffer, also visited. Starting Wednesday visitations will be limited to immediate family and grandparents. Others will have to see him through his window. Joshua will start to be fed intravenously today as he has stopped eating, but this was expected to happen because of the loss of his taste buds and the nauseated feeling from the radiation and chemotherapy. Today is the second day of heavy chemo and we are hopeful that Josh will handle this one as well as the last. Still no sign of infection from the blood cultures taken earlier in the week. Also, Josh has not spiked a fever since Wednesday afternoon.
this will be a critical week for our family with the transplant happening on Thursday, March 14. Chaz will be here at the Hospital on Wednesday and the marrow aspiration is scheduled for 7:30 a.m. the following morning. If all goes well Joshua should receive his new bone marrow late in the afternoon. Chaz will return for a checkup Friday to make sure he is OK. The Cocanower family (where Jason has been staying) will be bringing Jason down to us Friday morning. The boys are going to stay here with us until Sunday afternoon at which time we will make some kind of arrangements to get them to the Phelps family house in Elkhart for the following week. Jason and Chaz have been well taken care of and shall continue to receive excellent care from the families where they are heading to. We are very thankful to have such wonderful friends taking care of our boys.
Friday, March 8, 1996:
Joshua has finished his total body irritation treatments with not a lot of trouble. Joshua also received a testicular boost of radiation and will be receiving a spinal tap with chemotherapy to help prevent the cancer from spreading to his central nervous system today. The radiologist told Joshua that he was about the best patient that they have had. He lay very still throughout the whole treatment. Everyone here at Riley's has been very nice to Joshua and has helped to ease some of the anxiety about this whole procedure. The Apheresis coordinator has made a lot of progress on the donor list. Josh's counts are dropping as expected, but he has not needed infusions of blood products yet. If you signed up on the platelet donor list and have not been contacted yet, please be patient as she will contact you soon.
Thursday, March 7, 1996:
More of the same for today. Josh received his seventh radiation treatment (out of eleven total) at 7:30 this morning, and is doing well. The mornings are better for him, he has been getting nauseated and has spiked a fever each afternoon. The doctor took blood cultures to rule out infection and started him on a couple of antibiotics just to be safe until the results of the cultures come back. He will be going into semi-isolation on Saturday and will not be able to come out of his room again until well after the transplant and his counts recover. He will be allowed to have visitors, including his brothers as long as they are healthy. We will have to scrub from elbows down and wear a mask and gloves.
Tuesday, March 5, 1996:
Today Joshua started on his adventure to see the Wizard. He received three radiation treatments starting at 7:30 a.m., 12:00 p.m. and finishing at 4:00 p.m. The radiation treatments made him rather nauseated and very tired. Joshua's day starts early and seems to be for ever lasting around here. A typical day begins at 4:30 a.m. with a blood draw for morning labs, medications starting at 6:45 a.m. and constant monitoring of his vital signs throughout the day. The evening finally ends around 9:00 p.m. with more medications. Joshua is looking forward to visiting with Chaz for a while tomorrow. A good night's sleep and back traveling down the yellow brick road tomorrow. As for Kim and Chuck we long for the past and dream of the day when our family is once again reunited and life begins again.