What a treat and an honor. Thank you again Andrew for making a magical connection for Daniel and coordinating a visit with Ring of Fame Bronco Player William 'Billy' Thompson and Larry Brunson. I promise you, these gentlemen had to be two of THE nicest men I have ever met. And anyone that is willing to come and talk football with Daniel for over an hour is a HERO in my book. Daniel was in hog heaven and talked stats, strategy, and football crap non-stop with Billy Thompson while I had quite a heart to heart with Larry Brunson. It is amazing how everyone has their own personal story to tell and how this man also had a huge heart to listen to Daniel's story. Daniel loved the gifts they brought him and I know he will cherish their conversation as I will mine. It was wonderful to see him happy for a short time. They were amazed at how knowledgeable he was about the details of the sport and had no doubt he would succeed in it at any level he put his mind to. They talked about journalism and commentator connections in broadcasting and yes even his goal to to be commissioner of the NFL some day. They told him of their journeys and how they struggled, and assured him he would get to where he was going as well, and I think he may have believed them. It was truly motivating. And now he is truly pooped. It was his most draining visit yet. He loved every second of it but it took everything out of him. He will sleep for hours I am sure.
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He didn't throw up the KFC. Woot Woot
So today I left for the whole afternoon and spent it with Matthew. We went to a funeral for our dear friends' mother and grandmother, may she rest in peace and Daniel hung out with Rob. Well when the cats away the mouse will play...well not really, but the boys had a nice day together (reportedly) and the Wedgle's came by for a visit. Daniel slept through most of it I guess, but had a little bit of a conversation with Caleb. Then Aunty Debbie and Uncle Kevin came up with Gordy and my heart melted into a puddle when I got this picture sent to my phone. By the way Gordy, Daniel will not let me climb in the bed with him, you lucky Gordawg. On the way back to the hospital, I got the call that the kid has a craving for KFC mashed potatoes. So about face I go. He really wants the full meal deal but knows it is too much for him so soon after not eating for so long. By the way, his weight is now down to 96 pounds, but he is trying. I get it all so he can have a taste. He goes through phases where he wants to eat but is scared, or feels so full after one bite he can't eat. But not tonight ladies and gentleman. He was in rare form. Tame for our typical Daniel but there was a glimpse of the old kid. He gave it the old collage try full well knowing he is only "renting" this meal and that it will most likely not make it an hour before coming back up. But he said this way he might get to enjoy it twice. I'm so glad he can keep his sense of humor.
After 16 hours of sleep last night, partially due to a day of sickness , MRI and exercise partially due to Benedryl from nausea. Daniel was awake and in rare form. He showered early and under the recommendations of his Physical Therapist (also known as Satan) he PUT ON CLOTHES like a normal person. Well almost. He at least put on a shirt and new pajama shorts instead of just underwear. These two items are leaps and bounds from where he has been. He sat in the recliner chair and built some lego for a few hours. Rob ran all the way back to Sun Wah (our local chinese take out place) for requested very plain lo mein noodles and Daniel ate 4 noodles. BIG DAY!!! He has so far eaten three small things today and only thrown up once this morning and not complained at all about his mouth, so this is great. This afternoon Daniel's Grandparents came for a short visit then Rob, Daniel and I watched the old movie Brewster's Millions. It is a classic and Daniel really liked it. It is the first movie he has stayed awake for and Rob is thrilled he liked a classic Richard Pryor movie. He has plenty of ridiculous Will Ferrel and Adam Sandler movies to watch but now that he has seen John Candy he may need to rethink his taste in comedy. We told him John Candy was the early Chris Farley...He said "who?" Oh Daniel...so much to learn. There is lots of time. Nap time now and then hopefully he will wake up and have some awake time and a normal night before another good nights sleep. Normal is good.
Well, it's Friday. I needed someone to tell me that by the way. Days have a way of running into each other here. Especially when you don't sleep at night (like last night for example). So we have been here three weeks as of today. Daniel lectured the Doctor today that he is concerned that they are not doing their job because he is still feeling pain and doesn't know why they haven't figured it out yet, I admit there are times I agree with him. Results from his MRI this morning show that in fact the antibiotics are working (albeit slowly) to decrease the inflammation in his hips. He will continue to be monitored for clinical improvement over the next weeks until he can be looked at for surgical consideration due to his coagulation. They continue to monitor this as well. The Doctor described to Daniel very nicely today that when his numbers start to come back up (which he expects them to due in the coming weeks) he will naturally start healing on his own. IT JUST ALL TAKES TIME....ARGH!
So as I see it, t now becomes somewhat of an extended vacation here at The lovely Children's Hospital Suites. Where they wake you every 15 minutes at the call of a beeping machine and serve you applesauce and chicken broth any hour of the day if you like, celebrities visit your room and warm blankets are at your fingertips and they bleach every surface on the hour for you safety. So, we are hunkered down for the long haul and trying to make the best of a shitty situation. Daniel worked very hard to be social. This isn't easy. The morning got off to a roll with his buddy Ari Kutzer coming by. My apologies I was so busy talking to Ari's mom Cheryl that I forgot to take a picture of the boys. Then in came the whirlwind of girls. It has now been determined the for the time being there will have to be a one at a time rule. Although the girls are exceptionally beautiful and adorable. They talked Daniel to sleep. I tried to explain that girls travel in packs like this...that is their nature but there are just some things that boys will never understand. Nevertheless Daniel enjoyed all his friends coming by and he was in great form. He crashed hard when the girls left (or rather before they left) and was rudely awakened for physical therapy. His least favorite time of the day. But low and behold he actually worked the hardest he has worked yet. I was taught some stretches to help him do that will loosen him up as he has really tightened up over the past three weeks being in bed. He is toughing out with the eating and holding down all of his food (just little bits, but it is a start). Unfortunately tonight Daniel started to lose his long flowing locks. Actually he had his typical short crew cut but it still is hurting I think. Bring on the hats. Tomorrow bright and early Daniel will return to the examination room for an MRI of his hip to see if the course of antibiotics is working on the infection in his hip. Let's hope for the best. As for tonight we are going to enjoy a little bit of routine. One of mine and Daniel's favorite tv series is on at 8:00pm and a little bit of normal is fine by me. I just hope I can stay awake. So many of you loved ones have been concerned about Daniel, but equally concerned about how Matthew has been throughout the sequence of events that have taken place. If any of you know Matthew you know that he is the less vocal, less animated and less likely to show emotion of the two boys. This has been very hard on Matthew but, you are right you would never know. The first two weeks he had to take a lot of harsh words from his brother and see his little brother go through a lot of pain. Very difficult to see as you can imagine and surely there are a lot of psychological underlying feelings that go along with these situations as anyone of us with siblings could understand. We all have ill feelings about our siblings growing up, and Matthew and Daniel have never been the closest of friends. But funny how things like this bring families together. But the unexpected happened when Daniel was most scared and worried he called Matthew and Matthew was solid and steady, calming and reassuring. And Matthew took every bit of abuse better than me and surprisingly left each time with words I never heard him say "I love you Daniel. Have a good night." Matthew has stepped it up big time and I feel this is his summer of change. He has been going to work every day and assuming a lot of responsibility at the store, even though he is having a great time with cousin Gordy. He went to Dallas on a work trip with Rob to see "how the deals happen" (not really) and he has been spending a lot of time on his own while we are with Daniel at the hospital. No doubt he has had a lot of time to think. I am not sure what those thoughts are, but I am sure they have been heavy and difficult and burdensome for a 15 year old boy and I wouldn't wish them on any teenager. The past few days Matthew has tried to make excuses to not come to the hospital. He has been tired, or has felt a sniffle coming on and wouldn't want to risk exposing Daniel...but then something happened yesterday. Daniel started waking up and feeling better and we needed to optimize on this. Let's get Matthew here while Daniel is awake and feeling good. Low and behold. Like fish take to water it took them less than five minutes and they were bickering. AAAHHHHH...music to a mother's ears. And then there is another brother. Andrew. Dear Andrew Hudson. Andrew is one of Rob's oldest and best friends and no matter what there is always Andrew. In fact Andrew was in my delivery room when Matthew was born before the grandparents even met him so needless to say, we are very close. Andrew is one of the most motivating person we know and is the one Rob goes to for support. Today he came and brought an awesomely dangerous gift and spent time taking DJ Matty Matt down to the new Ryan Seacrest Studios and showing him the ropes and how it is really done on live radio (and live video feed) It was so cute Andrew and Matthew dedicated a song to Daniel up in his room while we watched on the closed circuit tv. Thank you Andrew. You really are a BEST FRIEND and our brother.
Good Morning! And indeed it was, to be greeted by this adorable Green Bay Packers cookie arrangement from Bill at Stanmark Electric. Thank you Bill. It certainly brightened Daniel's face. I doubt he will eat them, but probably only because he thinks that is sacrilegious or superstitious mumbojumbo.
Daniel has set a goal for himself, since he is very driven to TRY TO EAT four times today. Something small but just something. He knows he has to try and that if he doesn't he will be taking his IV home with him and we do not want that happening. He can do it. I have faith in him. The kid has an iron stomach. He just has to get back to it. So due to the chemotherapy Daniel's senses are hyper sensitive, not only his taste but his smell. As you expect it effects his love hate relationship with food but you would not think how it effects everyday life here at the hospital. Daniel literally can smell you coming. What I mean is that Daniel is having a difficult time with a few of the nurses, in particular, the male nurses that were scented deodorant. Most of them know better on this floor since all the kids are going through this same situation but more than anyone Daniel's newest Doctor that came on rounds this week should know better. In walks this Doctor (very knowledgeable; extremely sweet) on Sunday morning for rounds and low and behold in wafts his very strong cologne. Daniel is quiet and polite and his blood pressure is quickly escalating as he is holding his breath. we are speaking with the doctor asking lots of questions, chit chatting and after he leaves, Daniel has a massive attack about how bad he smells and not to let him in anymore. Well we explain that we can't do that and that this is a very sensitive thing to talk approach him about. He has been a Doctor here for many years and this is a very personal topic yada yada yada.... next day comes and in walks the Doctor. He checks Daniel out (as he holds his breath) and Daniel texts 'go talk outside. he F@&*KING stinks'' so we take our conversation outside the room and when we return Daniel pleads to not let him back in the room. Thankfully Daniel does not mind the smell of a particular Febreeze that we have for the room. He proactively asks the nurses if he can switch Doctors , to which they say NO-he is the Head Doctor on the floor this week. He asks if we can please put a sign on the door asking people to be aware of his sensitivities and not wear scented deodorant and cologne. He is trying to be politically correct and cover all his basis. Day Three- In walks Dr. Peppy Le Pew. F@#&*^K IT. I sit back in amazement and listen to my child. "I am sorry Doctor but I am trying to be polite here and say this in the nicest way possible, but the chemotherapy has really made me sensitive to tastes and smells, as I am sure it has to all the kids here and you are wearing some really strong cologne that is making me very sick and probably all the other kids too. Can you please not wear it anymore when you come to see me." My first instinct was to say Daniel stop being rude, but then I thought. Their whole lives I have been telling both sons to advocate for themselves and lookey there. That is exactly what he just did. Don't beat around the bush. Well guess what happened today? In walks the Doctor and guess who is not smelling. The same one that is yes still wearing the same cologne but very little and put on a gown and when approaching Daniel asked him if it was better. I am so amazed and proud of Daniel for standing up for himself where he felt it would make a difference for his comfort. This is what matters! And this is how I know he will accomplish whatever he sets his mind to. Daniel received a package from Bronco headquarters with a signed photo of non other than John Elway himself and a very nice note of encouragement from the head office. He immediately had it sent home to not have it contaminated with "hospital germs". Guaranteed it will be a prized possession. Thank you especially to Amy Schinagel for this one. We are so fortunate to have friends in our lives that know how important these things are to Daniel and his spirits that they have taken so much of their own time to make something so special happen for him. I know these magical women still have some special tricks up their sleeves. Please know we couldn't love you more for what you have done for our family. Our gratitude is endless and the smile on his face was worth it. (Amy I am sorry I didnt get a picture on this one).
Speaking of friends and smiles, look who finally got to visit. We have cancelled on Aaron so many times, we are glad he finally got to come up for a visit. It was short and sweet but Debi and I chatted and got to see the boys laugh and smile which was wonderful. I hope many friend's visits are coming in the next weeks. I think it was very motivating for Daniel and it made me happy to see his friend see that he will be okay. I worry about the kids so much and how Daniel's illness frightens them. I am trying to keep my sense of humor through all of this because I know how important that is but when I saw the daily weigh in today and saw the scale hit 100 pounds my heart stopped. I have seen it coming ...especially as i have been watching Daniel do physical therapy in nothing but his boxers, because that is what he has been most comfortable in (coolest because of his fevers). Just when he was getting his appetite back and the nausea went away. The mouth sores came and his willingness to even hear about the suggestion of food has gone. He won't even take a sip of water because of the pain in his mouth and as he tries to stand and it looks like his thin little weak shaky legs will break, all I want him to do is eat something. PLEASE JUST TRY A LITTLE SOMETHING. I am begging him. I swear I don't want to cause him pain, but maybe this time I have to. It is for his own good.
To feed. To Nourish. I always thought it was strange that when we celebrate, or mourn, or just socialize, whatever the reason usually it always revolves around food. I don't know if it is exclusive to being Jewish, if it goes back to our history when there was a time when there was no food in desperate times, but we always seem to fall back on taking food to an occasion. When someone wants to help, typically the best or sometimes only way they know how is to make a meal. Believe me not long ago after my surgery it was the hardest thing to accept yet the most appreciated. And I understood that we feel helpless and that is all we feel we know how to do because that is our instinct. Probably as a nurturer and a mother is to nourish and feed. So to see him literally wasting away and refusing to even talk about food or drink when he needs it to sustain his strength. This kid. If anyone knows Daniel you know this kid is an eater. This kid can eat the amount of two grown men at a dinner table and still have room for dessert. For the first week and a half the doctors said don't worry about it stop offering, he will be fine, then it changed to he is on I.V. nutrition he will be fine, don 't worry, the chemo isn't allowing him to keep anything down. Now they tell me to start to be concerned. He is losing muscle mass and he needs to at least try. Now we are turning the corner and looking towards the point of going home (at least for a short time) and they do not want him going home with I.V. nutrition. What can a mother do to force a child to want to eat. We used to say you can't leave the table until your food is all gone. Now I just want him to take one bite. Last night was a great night in my books. Daniel only woke up once for the bathroom. Me on the other hand thwarting beeping machines until dawn. Doctors reports came in this morning and his numbers are almost as low as they can go. This means that the chemotherapy seems to be doing it's job. For those of you that understand all the medical lingo, his ANC is 10. This means it can only get a bit lower and then will start going back up to normal range which is 500 , to put this in perspective when he first got here just over two weeks ago those his white blood count was 4300. As this (ANC) number climbs, his mouth sores will start to heal and he will inevitably get stronger.
We had a very nice early morning visit with Rabbi Leban and Daniel was cordial and quite animated.They talked about the World Cup and Israel and Rabbi Leban shared some personal experiences of when he was a child. Uncle Ricky brought Sean (from work) up for a nice late morning visit and it was nice to have him awake for so much conversation. Aunty Debbie joined the party and then when conversation turned to food that was enough to make him nauseous, so that ended the visit early. A later afternoon visit from Booboo and Zaida was pretty funny to watch as Daniel helped his grandmother with her ipad. All the visits led to no sleep all day so after a very quick visit from Rob and Matthew it was an early bedtime. Sounds good to me! Let's hope for a second good night in a row and getting that ANC down to nothing. I know there is more and I am probably forgetting something so please forgive me. I feel like Daniel will be ready for his friends to start visiting for short periods later in the week which will help him a lot. Let's hope. After a terrible night of pain from mouth sores keeping Daniel up and him not being able to even drink a sip of water without wailing, Doctors have once again increased his pain medication to help with his discomfort. He was very resistant to the rinses and remedies they recommend until this morning when he hit a wall and we had a little talk. He realized that he was in fact able to overcome the pain in his leg even though it took two weeks and a lot of grief, but he did it, and he can do this too. He can do anything! He got a little pep talk for Coach Foonberg too who knows first hand how bad it can get. He knows that he has to put in the work (doing the yucky rinses) because he said that he can't possibly deal with this pain for two weeks. He wants to be able to eat so bad. His weight this morning is unfathomably down again and that makes it almost 15lbs lost on his already skinny body. It is amazing he is able to have any energy and a will power. It amazes me what the body can withstand, and what mother's heart can watch happen to their child. I will keep my strength for him.
Well it finally happened. Daniel is starting to ask when he can go home. I only wish we could answer him. He is so frustrated. He is starting to scream at the annoyance of the beeping machines and the unrelenting nurses and their assistants coming in every 30 minutes for I don't know what reason. Housekeeping comes in to bleach everything floor to ceiling twice a day (I personally don't mind this and wouldn't mind this at my home on a daily basis) and the sounds and smells of everything present annoy him. Although his leg pain seems to thank goodness be mostly subsided at this point, I assume due to the chemotherapy getting rid of the Leukemia cells. Subsequently the nasty chemotherapy drugs have now left him with mouth sores that are a different kind of misery. He is unable to even drink water and is refusing all suggestions to help himself. He is now cranky and inconsolable. I can't relate and he keeps reminding me of this so I need to back off and let him be. By 8 o'clock I insisted on putting on a video to distract him. I selected our Planet Earth series and low and behold he was transfixed. He quieted down long enough to relax at least. I may be on to something. Thank goodness it is a box set and we have like 10 more hours to go because I don't know when we are getting out of this joint.
Daniel had a fairly good night only up a couple of times. Rob came back from Dallas and Daniel was very glad to see him, as was I. When Rob got to the hospital this morning I WENT HOME. I had a nice shower and nap in my own bed for a couple hours. Rob reported Daniel had a so-so afternoon and now that I am back up here he is sleeping again. I brought up a couple comedy movies so hopefully we can watch those together and cheer him up. Nothing like a little Will Ferrell for the 14 year old's soul. I just hope he feels like watching.
Yesterday was such a good day. A special visit, getting out of the bed and into the chair for awhile and actually eating a little bit of food. Some plain white rice and some Coke. Nothing sounds appetizing to Daniel and almost everything smells awful and nauseating so when we found the rice it was very exciting. By the way, thank you to Aunty Debbie. I think King Soopers may be a little concerned she had "the munchies" from the GRAND BUFFET of taste options she brought for Daniel to sample. We need to keep offering lots of things to find what will be settling for him. Whatever he craves or asks for, Daniel's TEAM is on the run to get him. After a nap, resting from the hooplah of his afternoon, he watched one of his favorite tv series that premiered last night. He hasn't watched more than a few minutes of tv yet. His eyes and tolerance for visual stimuli are getting better. His favorite person in the world, cousin Gordy, came for a visit and he managed to stay up until 10 oclock. Latest night we have both had yet.
Then came the lows...up every hour as usual, but then at 2:30 he got a terrible nose bleed. This was very scary for him. It lasted quite a while and he needed to receive blood and plateletes. Consequently, blood must have gone down his throat upsetting his stomach which then set him off vomiting the rest of the night. When he saw blood in his vomit that was the end of it. He lost it, but maybe even worse was when he saw the rice he worked so hard to finally keep down after almost two weeks of not eating. He was feeling very defeated and is really feeling like his body is betraying him. How could he not. So the rollercoaster of physical and emotional wellness goes up and down and he wants to get off. We all do. It is almost 2 PM now and 12 hours later he is trying to sleep last night off like a bad hangover that won't end. Every time he moves he throws up again and he can't even hold down his morning pills, but when the nurse comes in for vitals he opens his eyes and weakly says "okay I'll try again." He is trying so hard and doesn't know why his body won't just let itself get better. He did stand up on his own to get a weight today without a walker and was tall and straight and did not shake and although he was down another pound, he said "did you see I stood up by myself, I am getting stronger" We will see when he wakes up if he throws up the nothing he has in him and goes back to sleep, or if he is willing to try some more plain white rice, knowing it just might end up back in the bucket. After all his day is only starting when he wakes up right? Well it's not everyday someone like Ryan Seacrest pops in for a sit down. But today he did. Daniel was selected as THE kid at The Children's Hospital that Ryan Seacrest came to visit with to launch his "Seacrest Studios" today at The Children's Hospital. He will open a multi media studio on the first floor that will feature a site where famous artists will go periodically to chat live, but mostly where kids can go and be creative. But when kids can't leave their rooms or aren't quite up for it yet (like Daniel) they will be able to interact from their rooms via the BBOY45 channel throughout the hospital. What a facility this place is! So today (with some extra magic from our extraordinary friend Andrew Hudson) Daniel got an extra special opportunity to come face to face with a real superstar. No it wasn't a football player like he is holding out for, but it was really REALLY cool.
Today was pretty uneventful and that is just fine by me. A little boring is good for a change. The opthamologist came and dilated Daniel's eyes this morning (that is never fun) and reassured us that his blurry vision will go away with time and as some of the pain medication leaves his system. He spent a good portion of the day in bed waiting for the dilation to go away. Later that afternoon the wonderful Dr. Nicole Eberle (see thank yous), took her own personal time to come remove Daniel's braces. She knew that no one else could be trusted to take care of her beautiful handiwork. Daniel's straightening progress will have to be put on hold for now (even though so far his teeth look great) until the future, because right now he can not risk having anything sharp in his mouth that can do any possible damage to his compromised tissue and and gums. He was a trooper and Dr. Eberle was fantastic. The rest of the day was quiet without Rob around and we just took it easy. Daniel ate a few bites of food today and watched a little bit of tv so things were just 'ordinary'. I even had a few minute nap...WHAAAT???
Today was boring but stay tuned for tomorrow because there is something very VERY exciting happening. I can't tell you anything right now it is a big Seacrest. I need to recognize every good thing that is happening along the way.
Daniel had his LAST CHEMOTHERAPY treatment this morning. We did a happy dance and now pray things take the right effect. Actually, Daniel's numbers are all going in the right direction!!!! I joked with him yesterday that I have never been so happy with him for getting such a low score on something. His White blood count is dropping (which is good for now) his other blood counts are climbing (also good). So all and all GOOD MORNING! Rob took Matthew in my place to Dallas this morning to the lighting market for work so I am on my own until Friday with Daniel. I know this was extremely difficult for Rob to go but the business has to continue to run as hard as this all is. It is a struggle for Rob to not be with Daniel at all times and Daniel would prefer to be with Rob 24/7 over me, however in all reality that is not how it can be. It is a reality that the business is forever and this terrible situation with Daniel is not so the business has to keep going. The great news is, as I sit and write this Daniel is watching one of his crap tv shows for the first time since we got here, and I couldn't be happier. I think this is the first time I won't scream to "TURN THAT SHIT OFF!!!" Although we have had very little time to rest and even less time to think about everything happening, I have come to realize that everything happens in time. Not easy to say for an impatient person like myself. Why this has all happened we don't know yet, however I do know that we listened to Daniel and all of his complaints and worries along the way and never disregarded his pains and blamed him for crying wolf. Because of this, it has led us here today. Through a very long series of incidents Daniel is now in an unusual predicament that only time and modern medicine will allow to cure. We now know that things were missed, mistakes were made and unpredictable misfortunes arose that have now created the perfect storm in Daniel's sick body that make it so that he cannot fight some of these problems on his own,so therefore we need to let medicine and time do their thing.
For a few reasons, I am not going to go into right now, I will just say that Daniel's MRI from yesterday revealed progression of infection and now necrosis of the bone in his hip area since he was released from his hospital stay in February. The Infectious Disease doctors are fairly certain of what type of infection it is but can't be 100% sure witho Now since he has no immune system of his own to fight with because of his Leukemia, he has no ability to fight this infection and now that the chemotherapy is killing off his ability to produce all healthy blood and his coagulating problem prohibit him from being able to surgically remove the infection or even explore and identify it specifically all we can do is treat it with another antibiotic and keep working on his blood to get him ready for surgery...and give it time. So therefore time now ticks away as we wait for him to get to this point. We hope that all things point to the end of the week and they can operate by the then and that by then the antibiotics do their work and his blood keeps going in the right direction so that he is in the right stabilized place to operate. So another piece of the puzzle falls into place and I get a little more grey hair. Daniel got out of bed this morning for the first time and we opened the shades and the sun came in for the very first time and we did SOMETHING!!!!! I couldn't be happier. He hasn't liked the tv on or his phone since light or text is bothering his eyes. He sat up in the chair and built a LEGO set. Something he used to love and hasn't done in a very long time. It was quiet and it helped pass more time. Something we have a lot of these days. CT scan last night showed that Daniel in fact had an infection. The infection is some kind of an abscess in his hip/pelvic area. The original spot of injury (that's right for those of you following Daniel's story from the very beginning). So this afternoon it was back again to MRI with sedation to take a closer look at his hip and compare it to his previous MRIs since September. I will not go into details, but sure enough Daniel has a fair amount of either blood, infection and inflammation in the hip, area. The problem is the only way we have of helping Daniel with this issue is treating with yet another antibiotic right now because we can not get to remove the infection or even aspirate and evaluate the site because he is considered inoperable due to his bleeding and coagulation. This is a separate issue from the Leukemia in a way, however they go hand in hand because his compromised immune system cannot fight the infection itself, therefore in this situation it is just a waiting game for the antibiotics to work and the bleeding to get under control to be able to get in there for evaluation without putting him at risk.
Meanwhile after rounds with SEVERAL doctors they have assured us that Daniels "numbers" look good and are headed in the right direction. His white blood count is down again today and this is great news. Daniel requested a quiet day with no visitors today and some ice cream. If we can give him this I feel we gave him something to make him happier. Both sets of Grandparents came to visit today even though Daniel slept through most of the day.
Rob truly gets Father of the year for all he does all day for Daniel. When he is awake Daniel is asking for something every second, either a position adjustment for comfort, temperature adjustment because his personal gauge is so out of control, constant foot massage because of swelling and Rob hasn't complained once. He may just also be nurse of the year. Because of Daniel's ongoing high fevers (either as a side effect of his chemotherapy treatment or possibly due to his body naturally fighting the Leukemia) Daniel is having a CT scan this afternoon to look for any undetected infection in his chest or belly. If they find anything that will just mean he will need to have a more specific antibiotic. He is already taking numerous broad spectrum ones. I would like you to meet my new daughter in law Amber. They met several shifts ago in a chilly hospital room. It was early June. We wish it was under better circumstances, however we couldn't be happier. Although all the nurses are absolutely amazing ( they all look about 12 years old) these two have kind of taken a liking to each other. Chemo ends in October. I expect a lovely fall wedding.
Without questions and at a moments notice the spectacular Semion packed up his things and came at Daniel's beck and call to prep Daniel for the fight of his life. Maybe a little premature and basically his regular every other week haircut but that is what wanted. Thank you Semion for your compassion and love.
Daniel had his first really descent night of sleep last night since we have been here and then proceeded that with pooping for the first time. I know he would hate me for writing this but you know how it was all about sleeping and pooping when they were babies....well it is back to that. His white blood count is consistently down which means his chemotherapy treatments are working and it is evident his pain level was way down today. He started his new treatments and along with has brought some unwanted side effects. He is having fevers of 104 degrees that frighten us and are therefore sending his platelets out of whack and he has started vomiting. Poor baby. Since he hasn't eaten at all in a week and now isn't really able to tonight he will begin TPN which is actually IV nutrition. Oye, all the things you never wanted to know about. On the bright side he was up for a visitor from his buddy Gilly. It was a miracle to us to see him smile today.
It brought more tears to my eyes to see this touching picture of Ari Kutzer placing a note for Daniel in the Kotel for Daniel yesterday in Israel. Thank you Kutzers. |
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July 2016
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