1 June 11, 2008 at 04:02 PM EDT
Kole's chopper ride to HMC went well. Kole has a large tumor in his thoracic/abdomen. It has compromised his breathing slightly, but he isn't severe enough to be in the PICU yet, so we are in the intermediate area. It is also causing his airway to be shifted, but not closed, which is good. There is also extra fluid around his heart, although the echo-cardiogram he had this morning showed strong pumping action and not quite as much fluid as originally thought. He has had many tests so far and we have only been here 16 hrs. A biopsy of the mass was taken this morning. Also, while he was under anesthesia, we consented to having his left lung drained and a specimen was also taken to evaluate this fluid. They also needed our consent to put a portal/IV in his neck area as the one in his arm was being compromised by movement. He also has one in his foot. Everything went well today, as well as it could. Kole is slightly uncomfortable but managing the whole experience quite well. We will have an answer as to what this "thing" is in his chest tomorrow, and then a plan of action as to how we will deal with it. Please pray this evening for us, as that is all we can ask or hope for right now! Speedy diagnosis, full recovery. Love, The Allinghams
2 June 11, 2008 at 06:01 PM EDT
Kole is quietly relaxing as the anesthesia is still wearing off. He is watching Care Bears. He is breathing normally right now, blood saturation looks good. Hopefully this will continue and his breathing will readily improve after the lung drain. We are keeping an eye to make sure the lung does not fill back up. They changed the dressings on the central line/IV in his neck, thankfully, as they were oozing and looked really bad. We had an Xray to make sure the line was in properly. It is. Thank you for your thoughts and prayers.
June 11, 2008 at 11:14 PM EDT
Kole was struggling this evening. He never quite came out of that "anesthesia" hangover. His heart was racy and the oncologist here, Dr. Powell, said he just needed a break since his heart and lungs have been on overdrive. They finally officially moved him to the PICU, 7121 bed 3. He has been incubated and is on a breathing machine temporarily to reduce his struggle. He also has a chest tube in to drain the left lung. Right lung looks great. They are starting steroids to see if there is any affect on the tumor, to possibly shrink it. If the tumor is a lymphoma then it should start to shrink. If not, the steroids will just help the swelling/breathing. They ran an arterial line to check blood pressure and so that they can keep taking blood to test. He is on albuteral for breathing and alopurinal for reducing uric acid. They have him totally sedated and vitals look good. The ronald mcdonald house is full tonight so Karl and I are staying at a shady ma and pa motel down the street. we will get on their waiting list in the morning. Please continue to pray for him, and us. We should have the result of the biopsy tomorrow and will know exactly what we are facing.
June 12, 2008 at 02:22 PM EDT
This morning we finally got on the waiting list at Ronald McDonald house, possibly a room there for us tomorrow. Tonight we will stay in the same place, Simmons Motel in downtown Hershey. At this time, we feel that if you would like to come for a short visitation that would be fine. When people ask us is there anything that we can do, we would like to tell everyone that what we need most right now, other than prayers galore, is good meals. It gets expensive quick here trying to eat in the cafeteria. Not to mention our motel bill. So if you are planning on visiting or know someone who is, please have them drop off something yummy. You can even contact my mom, who is driving back in forth. We have everything we need to refridgerate/reheat. Kole is sedated and will most likely remain that way for a few days, so the risk of overexcitement is gone. Just be mentally prepared for his appearance. No sick kids or adults allowed. They are strict here about visitation, so just make sure to follow the protocol. This place is wonderful. Ask anyone anything and always a friendly answer and a smile. *****An update on what we now know....this morning we were told that overnight some fluid had accumulated in the right lung, the better of the two, which did not make us happy. However, it is now gone, so the left side, again, is the main concern. Today they had to do a small blood transfusion due to low red blood cell count/hemoglobin. They took him off the ventilator and he was doing fine breathing on his own. They lowered his sedation level from 4 to 3, which pretty much just means he is a bit more aware. However, we are not sure if this is a good thing, because when he is with-it enough to know we're here, tears stream down his cheeks and he tries to move toward us but can't. Dr. Powell said our biopsy results are not in yet, however, should be by tomorrow. Kole is his main priority, as he said this case is pretty much unlike one he has ever seen. Right now they are pretty certain it is cancer. What type is still up in the air, yesterday he was leaning toward lymphoma which is why he began the steroids, but today he seems to be leaning more toward sarcoma, which is a tumor of the soft tissue/bone family. They have Kole sedated right now and are at this very moment extracting bone marrow and also small pieces of actual bone to test to see if this has spread to other areas of his body. We pray not. The tumor alone is enough to have to deal with. In either case, we are garnering a plan of attack and they just want to know all they can so they keep doing tests while he is asleep. The more we know, the better the fight. Regardless of what this tumor is, it is too big to be taken out right now. They will have to shrink it first, and the word radiation was finally mentioned last evening by the PICU doctor, Dr. Ceneviva. We are all trying to stay positive, but honestly, it just seems like over the last few days things just keep getting worse, and I am ready for definitive answers and a positive plan of attack. Kole is strong and will fight this. We appreciate all your prayers and mental hugs, thank you from the bottom of our hearts.
5 June 12, 2008 at 09:07 PM EDT
Kole had another blood transfusion this afternoon and responded really well. The bone marrow aspiration/bone sample went very well too. They are keeping him as comfortable as they can. Anyone who knows Kole well knows how strong and persistant he is, and the nursing staff here is getting a taste, too. The anesthesia they administer to him is to keep him out for about an hour, but the little tiger keeps rousing after about half an hour, so they finally had to give him something a little stronger so he doesn't want to pull all his portals out. This did drop his blood pressure a little low, they were worried for a few minutes, but it came back up and is now normal. He also ran a fever earlier butresponded well to the Tylenol. At this time they are putting in a feeding tube which will be fed into his intestines, prohibiting any regurgitation. He hasn't eaten since Tuesday morning so Karl and I were both really adamant about wanting him to have some nourishment. Before he was sedated, he kept asking for juice and chips. They are going to come and get us when they are finished putting the line in. Tonight is going to be "spa" night, and nurse Leah and I will be giving him spongebath.
6 June 12, 2008 at 11:42 PM EDT
Tonight we gently bathed Kole and got him lotioned-up. He smells yummy and the nurses are all admiring him, especially his long lashes. He also got his teeth brushed. They brought an xray machine in earlier this evening which showed the feeding tube in place properly as well as the chest tube which drains the left lung. His vitals are all wonderful. They took him off the ventilator again and he did well, even better than this morning, so we are thinking the antibiotic/lung drain combo is working well. He is being fed right now. They removed the dressings from his bone marrow aspiration and it looks good. Karl and I were in there earlier giving Kole some exercise and just moving him around a bit. I am getting really good at manipulating all those tubes and lines. It has been a very long day, but we are happy we had several visitors! Thank you for your generosity of the gifts you've brought to us, it means the world to us and we love you all. We just got done reading Kole his night-night book, Snuggle Bunnies, and are about to head down the road to Simmons Motel. We will keep updating. Thank you for your prayers, God bless everyone. Love, the allinghams
7 June 13, 2008 at 01:18 PM EDT
We couldn't sleep last night. We are supposed to be getting some answers today and hopefully a plan of attack. I sat up reading eight pages of information on the Childrens Oncology Group, and we decided to consent to an extra bone marrow aspiration which will be used for research, and hopefully help other children. The Ronald McDonald House finally accepted us this morning and we got our room, we are in room 15. We have 2 double beds and are even allowed to have extended-stay guests, if anyone is interested in coming for a night or two please let me know! As of right now the generosity of everyone is really awesome, we have lots of food to eat now, thank you so much! Thank you to everyone who is supporting us by collecting money as well, we have received some of these donations already and words cannot express our everlasting gratitude to all of you. We are really floored by all the support and prayers. When we arrived here this morning a new nurse was on and said that everything went very well over night. His blood pressure dropped again, but is back to normal now. Both lungs look slightly better than they did yesterday, but still decreased on the left side. A music therapist is the room with Kole right now singing and playing the guitar, the resources here are mindblowing. He is on sedation level 3, so hopefully some of the music will make it into his little ears....A man from radiology just came and injected a dye into Kole because he is going to have a bone scan today....But we do have some good news, the bone marrow biopsy came back NEGATIVE and they are doing the bone scan just as a double-check and also so if they need to compare any future bone scans that might need to be done to the original. They sure cover their bases here. Kole will have to be moved downstairs to do the actual scan. I hate when they move him because they have to take him off the ventilator and manually pump his oxygen and that freaks me out. Dr. Powell has not showed up yet to say whether or not they have an official diagnosis. When they do, we were told to expect to start chemotherapy relatively quickly. If all ducks get in row, this could be as soon as this evening. Dr. Ceneviva said heart and lungs are top priority, and reducing the size of this tumor is of main concern to help these organs get better. Right now the tumor is approx 10 cms, which isn't much to an adult, but considering its location and his size, it is taking up approx 35-40% of his chest cavity. It is mainly on the right side, they think it may originate in the diaphragm area, but aren't sure yet. It extends upward behind the ribcage, between his right lung and liver, and is pushing on his liver, although liver an kidney function are still good. From there it extends into the middle behind his breastplate and is pushing his espophagus/traich to the side a bit and is pushing on his heart from underneath. Finally, it seems to end on the left side, right between the heart and top of left lung, which is causing all the problems with the left lung. From the exterior of his body, you would never even know it was there, except for a small protrusion at sternum area. Which is why we wanted the xrays done in the first place last friday. They told me this came back normal, which is confusing the doctors up here greatly. There is a lot of anger issues I am facing because I really had to fight to get my pediatrician to listen to me. They weren't even going to send him to the hospital. I am glad, for once in my life, I asserted myself and fought. Don't care what they think about me, I am glad I did.
8 June 13, 2008 at 04:24 PM EDT
Kole's bone scan is finished and they just brought him back up to his room. (whew) This afternoon they plan to take him off the ventilator and allow his lungs to breathe on their own again. They said probably two times today they will do this and this will strengthen him. He is getting more nourishment also and hopefully we will have some sort of movement. Dr. Powell, the oncologist, just came in and told us he needed to meet with us and my heart just about exploded with anxiety. The results are still not in, but he believes in his mind that it may be one of three different kinds of tumors, all treatable. We are waiting for the green flag to go on treatment, but can do nothing until we know for sure except keep Kole stable. He said the top two in his mind are both types of sarcomas, the third being a teratoma. If it is one of the first two, treatment is about the same. I am a bit more relaxed knowing that we are getting closer to some certainty. Thank you all for your beautiful prayers and donations, we love you and appreciate your gratitude more than we could ever explain to you. And again, if you are wanting to come and visit feel free. Just let me know if you plan on staying over. Love, Renee Karl and Kole
9 June 13, 2008 at 07:05 PM EDT
No news still. Kole is finishing up the test-run they are giving him breathing on his own, and passed with flying colors. He had some dry mucous around his nostrils which I tried to clean up, and everyone knows how much he loves it when you mess with his face (sarcasm), and he starting moving and trying to resist, so that just goes to show you my stubborn little strong boy is still in there! Also, the left lung isn't putting out as much fluid volume, so that's great, too. Thanks for all your love and prayers and messages. And continue to pray for a speedy diagnosis and complete recovery.
10 June 13, 2008 at 10:16 PM EDT
No biopsy news yet. Kole had a poo poo this evening, which we were hoping for. We are soon going to retire to the RMH. The sleepless nights are catching up and this morning we slept-in later than we wanted to. So in order to get here earlier tomorrow morning, we are going to say night night to Kole earlier. Thank you for all your loving support and prayer chains, we look forward to seeing those of you who are planning to visit this weekend.
11 June 14, 2008 at 01:15 PM EDT
This morning our phone rang at the RMH and we were told to hurry over, because we have a diagnosis officially. We had to hurry up and wait and it was killing us (heart attack practically). Finally, a new oncologist, named Dr. Melanie Comita, showed up and she told us Kole has RHABDOMYOSARCOMA, which is a soft tissue cancer that originates from muscle. This was one of the three that Dr. Powell believed he had it narrowed down to even before the official diagnosis. They believe it originated in Kole's chest muscle behind the ribcage. They said that because of the size of the tumor, that it is in advanced stage. It has not spread to any other area of his body, however, at least no test that they have done so far suggests so. The plan of attack, chemotherapy which they are starting in about an hour. They are mainly concerned with reducing the size of the tumor as fast as possible in order to give relief to his liver, lungs, airway, and heart. The goal is to get him off the ventilator and chest tube as quickly as possible so that he can be moved out of the PICU and into a less intensive area up here on the seventh floor. They said that this is a pretty rare sarcoma, and that although 20% of all childhood cancers are sarcomas, that this particular type only affects about 250 children a year in the US, out of 12,000 children who develop cancer each year. We always knew Kole was special, and now he is even more special. They said it is really too early for prognosis, although they expect to have the tumor shrunken enough in about 3 months to begin to think about surgery to remove it. We should still be here in the PICU for another couple weeks. Please continue to pray for us, as I do believe they are being answered. They are very optimistic for us here. Right now we need prayer that the tumor will respond well to the chemo. Thank you for all of your love and support. For visitors, please note that now that he is starting the chemo, that he will be vulnerable to infection, and it is extremely important that no one is sick. I will keep updating as I can, right now I want to go back and be with him.
12 June 14, 2008 at 02:46 PM EDT
We are reaching out to everyone and asking for people to keep an eye out in the greater York area for apartments/townhomes for rent. We are really worried that when we are told we can bring Kole home to continue home treatment, that our environment where we are now won't be suitable as far as cleanliness issues. The people next to us smoke. The building is old. So please just keep an eye out for us. We are not really interested in anything too far south. We are looking for something between 550-750 per month (hopefully) although we may be able to afford something a little more if some utilities are included. No more than $1000/month with rent and utilities together. Please help us pray to find suitable housing to bring our boy home to. Thank you for all you may be able to do as far as scouting for us goes. Thank you so much. Love, the Allinghams
13 June 15, 2008 at 11:31 AM EDT
We just want to thank God today, Father's day, for blessing our lives with Kole. Kole had a great night last night and all of his CPAPs (where they take him off the ventilator for an hour or two) are going well. Dr. Ceneviva decided to take him off the sedation this morning, which is AWESOME news. This means they are ready for Kole to breathe on his own. The xray he had this morning didn't show much change, so the tumor hasn't gone down much yet, but his first round of chemo actually isn't done yet, it takes 24 hours, so it should be done in a few hours. They said as soon as the tumor starts to shrink, the left lung shouldn't be partially collapsed anymore. Right now they asked us to leave the room, because they are taking Kole off the ventilator, praise God. Worst case scenario, he will have to get the breathing tube put back in. If he does well, though, he will actually get moved out of PICU (Praise God) and down the hemonc ward, 7 west, into a "real room". Now that he is alert, he is really confused and fighting to get up. He was crying to Karl and I earlier, and we feel so bad, because we figure he is wondering why we don't pick him up and help him. He is restrained at this time, with a giant "airbox" over him filled with oxygen. We will keep you updated to any further changes. Thank you from the bottom of our hearts, your undying support and messages help us get through each minute.oy home to. Thank you for all you may be able to do as far as scouting for us goes. Thank you so much. Love, the Allinghams
14 June 15, 2008 at 04:04 PM EDT
Kole is doing very well being off the ventilator. All of his vitals are strong without any help whatsoever. We asked when we will be able to hold him, just getting thisclose to him and not being able to pick him up is killing me. They said as soon as his arterial line is out, which will be by tomorrow hopefully. His catheter should come out this evening, and we will go back to diapers! Dr. Ceneviva said things look good, and he should soon be downgraded, either back to the intermediate care unit or straight over to the hemonc ward, depending upon how hemonc feels about him still having the chest tube in to drain his lung. They are tripling-up on his chemo off the bat, they started with a 24 hr drip yesterday, which he finished, then they hung another 24 hr drip today. Also they gave an IV chemo therapy, and will finish with a third at some point. Then he shouldn't get any more chemo for at least 10 days. They said it will be a couple weeks till we can possibly bring him home, and then we will have to commute to return for therapies, and 3 or 4 months till the tumor is reduced to the right size for removal. For the long haul, it looks like about a year to a year and a half of total treatment. Thank you for all of your prayers, messages, and support. Kole is calling for ma-ma.
15 June 15, 2008 at 10:56 PM EDT
Well things are still pretty good. He is still in the PICU, catheter is still in (frown), chest tube is still in (frown), and arterial line is still in (frown), but he is mostly alert and trying to communicate with us if not for the terrible sore, raspy throat he has due to the ventilator irritation. They want to observe him overnight and will decide tomorrow I guess if he can be moved to PIMCU or hemonc. I didn't see Dr. Ceneviva all evening and I think he is the one who makes the call. They just had to give him something to calm him down a few minutes ago because he was getting kind of rowdy. When he does that, his heart rate goes sky-high and his blood saturation drops, so they want him as calm as possible. Karl and I tried to go out for a fathers day meal, but found it hard to conversate or have a good time. We are hoping that they will give Kole some more nourishment soon, it seems so long in between times he is allowed to eat. They took him off his blood pressure medication this evening, which is good. Thank you for all your prayers and support. It was REALLY wonderful to see all of you who came to visit today and thank you immensely for everything.
16 June 16, 2008 at 12:27 PM EDT
When we arrived at the hospital this morning, the nurse said she had some interesting news. Kole figured out that if he scootched himself forward, he could reach back and grab his tubes, and I'll-be-darned if he didn't yank out his own feeding tube. I had to laugh, but slightly concerned because they had it running straight into his intestines....I thought, this can't be good. But he's fine, and actually he has starting drinking Pedialyte from a sippy cup this morning. One sip at a time. He may be able to try to eat some soft foods today also. They removed his arterial line today, but still haven't been able to hold him. Also they took out his catheter so we are back to diapers. They are leaving the chest tube in because his lung is still draining. They are at this moment, giving Kole a breathing treatment, an xray, and another echocardiogram. It looks like a parade going out the PICU door. But they want to do these tests before he is moved, he is moving out of PICU and down to hemonc in the next hour or two. Finally we will have our own room. I will let everyone know exactly where we end up as soon as I know for sure. Thank you for all your prayers, things are slowly looking up and we appreciate all the love we have been shown. Kole thanks you all, and we look forward to seeing our Monday visitors.....the Allinghams
17 June 16, 2008 at 08:28 PM EDT
Breathing treatments are going well, xray came out great. Won't get the results of echo until tomorrow, but they honestly don't expect much change this soon. They said because this is a muscular tumor, that it won't reduce in just days, but soon enough there will be some lung and heart relief. We are finally out of the PICU!! Great news. This means they aren't concerned enough about his vitals to keep him in constant check. We are now in room 7252, hemonc hallway. It is more private and we have our own fridge and bathroom. Kole is doing quite well considering all the chemo they've pumped into him over the last two days. He can't sit up or quite hold himself properly, very weak. His voice is starting to come back, though. He is talking, but not much. He sounds very quiet and squeaky. He did drink almost an entire sippy cup of Pedialyte/apple juice mix. And he also had some yummy homemade applesauce, but he did spit some up. They said this is normal, as he will probably feel pretty nauseous for a few days. But we are happy he actually ate. He is watching Care Bears right now in his new bed with his daddy, and seems quite comfortable. Today seemed to be a lot more difficult for me for some reason, its almost like the tables have turned and all this week I have been really strong while Kole wasn't doing well at all, and now that he is progressing, I have seemed to emotionally regress. I think the past week has caught up to me, including the sorrow I felt yesterday as I spent my first Father's day without my dad. Thank you all for being there for me, especially today's visitors who, without realizing it, picked me up when I would have fallen. I love you all.
18 June 17, 2008 at 08:52 AM EDT
We decided to spend Kole's first, alert night in his new room with him. We couldn't stand the idea of him waking up through the night with strange people and noises and blips. We didn't really get good sleep, though. The room only has a cot, and we had to share it (smashed in a ball). They came in bright and early to do rounds and vitals. Dr. Unger, the oncologist on call this week, said his lung doesn't seem to be draining nearly as much. They have ordered an xray to see if there is a clog, but we are praying that it is because there just isn't as much in there. This morning I have to say his appetite seems to be back. So far, he has had several handfuls of Cheerios (by himself) and 3/4 of a fresh banana (by himself). Also he is chugging back the juice. I am keeping close eye, afraid it might all come back up, but so far its staying down. Today we pray the echo comes back good, the xray shows no clog, Kole gets some strength back, and that nasty tumor is shrinking. Thank you for all your prayers. Kole lays in his crib at night and gently whispers into the dark, just talking to himself (?). Perhaps he is seeing/talking to the angels you all have prayed for to come watch over him. Thank you and we love you all.or being there for me, especially today's visitors who, without realizing it, picked me up when I would have fallen. I love you all.
19 June 17, 2008 at 04:38 PM EDT
Kole just started running a fever, not terrible but enough to make us worry. They said we should start to see a drop in his immunity this week following the chemo, it is scary to think it is happening so quickly. They just gave him Tylenol and we hope that's all he'll need. They also drew some blood to make sure nothing's "brewing" on the inside. Kole is still doing considerably well, although today he is very clingy and whiny and seems to have a shaky tremble. We are all concerned with his drop in weight as well, my fat boy just looks so skinny. I am being told this is all a normal response to the chemo. I just had a meeting with a woman from Child Life, and she brought us some activities, books, games, movies, and bubbles. Kole loves the bubbles. He is watching Cars right now with his daddy, and we hope he will take a nap soon. He has stimulation overload, people just keep coming into the room, mainly to talk to me. I just spoke with Amy from the Four Diamonds (FINALLY!) and also to a psychologist who helps with parents. The best news I have had all day though, is this - our good friend William Seiler, who I have to credit with drawing our attention back to the lump on Kole's chest in the days preceding his diagnosis, has been working night and day to get a charity fund started for Kole, and it has paid off!!! We are happy to announce that we have a formal, lawful charity fund set up in Kole's name through COMMERCE BANK. It is called the Kole Jacob Allingham Fund, or KOLEBEAR FUND, and anyone wishing to donate may do so at any branch of Commerce Bank. Just tell them you are interested in donating to the Kole Jacob Allingham fund, and that's it. Also, if you wish to donate and can't make it to the bank, William will come to you. I have to get the OK to post his cell phone number over the internet. He is working tirelessly on getting posters and flyers and donation cans set up to pass around the community. Another exciting event today was that Karl and I got asked to speak at a giant Ronald McDonald House gathering which was held earlier this morning. Regional McDonald's branch owner/operators gathered today to present the Ronald McDonald House with a check for over $60,000 dollars to help expand the house, and Karl and I got to be part of it by getting up and telling our unique story. So many wonderful things are happening, I am at a loss for words and know that the hand of God truly is upon us. Thank you all for everything you've done and are doing and we love you and God bless you all!
20 June 17, 2008 at 09:14 PM EDT
Kole just isn't himself. It is hard for Karl and I to see him in this sort of deteriorated state. It's like he has regressed. The nurse assured me this is just because he has been laying around in intensive care for a week, but I don't know. It's like someone reached in and stole my son's personality/soul right out of him. He has developed a sort of nervous shakiness about him, his hands don't stay still, they just keep picking at everything. Part of this, I'm sure, is boredom, and some is sleepiness, but part of me is afraid it is something worse. I don't know, we are all so sleepy I am afraid we may be neurotic. We try to be strong for Kole but can't help crying behind closed doors. We went for a drive this afternoon while Kole napped and found a batting cage, and we hit a few. I wasn't into it at first but then found it therapeutic. That's worn off now though, back to reality. I miss my family and friends and the regularity of my old way of life. I can't wait to see you all tomorrow who are visiting. Thank you for your love and prayers, whether near or far. We appreciate all your correspondence, Love the Allinghams