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PART 2......finally done


lisaRN

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again , i am overwhelmed by the # of inquires and offers of support....

Thanks again to everyone.....

So anyway, as I said, my mom, sister and 81 yo aunt arrived on the 2nd of November…. THANK GOD! My mother in law, still sleeping over, was shocked when she came out of her room (well my room actually, We gave her our bed while Ahmed and I slept in the living room on sofas)…. She was completely shocked though to see my family…. Because although Tariq, Ahmed and I knew they were coming, I hadn’t told anyone in Ahmed’s family…. I figured if they knew that maybe they would try to cause more trouble in the interim.

So once my mother in law realized who was here and that she no longer had free reign of her son’s home, she stayed in my room for the next 2 days…. I can’t tell you how peaceful it was.

Now…. my family is the exact opposite of Ahmed’s in spite of sharing the same religion…. My family is fun and outgoing and always finding a reason to laugh. We are half Irish and half Italian and usually a very lively bunch. Needless to say, the atmosphere significantly changed, I felt like I finally had a break from the depression and crying and devastation that Ahmed, Tariq and I had been experiencing with the in laws (or is it outlaws….sorry).

My mom set right to work and kept on top of all the laundry…. My sister took over the kitchen and did all the cooking… what a relief…..help at last…..quite a contrast to a mother in law who comes out of my room at all hours of the night (and I do mean ALL NIGHT LONG)… trying to wake up her son and me….and between the IV beeping all night and her nonsense, I can tell you I was not very social at 1am, 2am, 3, 4, 4:40 etc…. and I don’t have to tell you that it was even more infuriating when Ahmed would tell me WHY she would wake us up…..SHE WANTED JUICE, she was thirsty! And after she got her juice she wanted to talk about $$$$$$$…. anyway you get the picture, I won’t dwell.

So now, I have sincere, loving, fun, optimistic HELP. Mom goes to the grocery store…. My Mom and sister take Tariq out whenever he wants to go….Blockbuster’s stocks have probably gone up from all the movies Tariq has been renting… how nice for him…. And now he has my sister to play with, although she is 31yo, she is like a kid, loves computers, video games, Star Wars….anything kids like…. She even resembles a kid, she is so tiny that when my mom recommended her primary care doc to her, the doc told my mom, “I’ll see her for this problem, but after this she’ll have to find a pediatrician….” That was this year!!!!! It’s so nice to have her here…. Now Tariq has endless attention….. Oh and my 81 yo aunt just simply adds sunshine to the whole situation (and a little direction to keep us all in line). :wink:

So all was quiet for a couple of days, I am sure my mother in law notified the rest of the bunch that there were now reinforcements present and stunned or not I don’t think they knew how to react. Good for us….

For the first time in many weeks Ahmed was smiling and laughing at all the joking around…. And even though my mom brought all her pets to avoid exorbitant vet/kennel fees, even that served as sort of a therapy to us all…especially since we don’t have any pets of our own. Ahmed keeps reaching to pet them and usually has a big smile on his face….THANK GOD.

Before I move on, I want to say one last thing about my family and their effort to help me. They put their entire lives on hold for us, so they could be here with us…. My mom and sister work as CNAs ( Certified Nursing Assistants) for an agency so they have some flexibility….but here they are not working, and they never thought twice about it….they have suggested they could come before but I tried to hold off because I know how much they are willing to sacrifice for us and I don’t want to take advantage of that.

Anyway, the rest of the Ahmed’s family has kept their distance for the most part, which although this makes my life easier, I am disgusted at the fact that they didn’t even call to see how he was….my mother in law stayed and after a couple of days came out of the room….she seemed to warm up to my mom and everyone and I actually saw her smile a few times….but after a few days she was back to her old tricks and Ahmed told me every time she sat beside him she would ask him for money or go on and on with the guilt trip attempting to force him to return to Egypt with her. Ahmed grew increasingly agitated in her presence and begged me not to leave him alone with her. When I needed to go to the bathroom I had to be sure my mother or my sister stayed sitting beside Ahmed to prevent his mother from initiating any conversation that would disturb him.

Through all of this I am amazed at how that family never asked about Tariq either….never even asked him how he’s been holding up……when they do speak to him it is usually in a harsh tone.

So to get back to the pneumonia…. After my mom arrived she was able to shield me from some of those distractions long enough to get back to the doctors etc….

On the Tuesday (November 2, 2004) after the Friday (October 29) that we returned from Fox Chase I contacted Ahmed’s primary care oncologist, Dr. C. I expressed my concerns that he hadn’t eaten in over a week and was growing increasingly weak. He told my that he had spoken with the surgeon from New Haven, Dr. F., and that Ahmed was dying and had only about a week or so left to live (it is important to note here that this was over 3 weeks ago)…. He said that Ahmed was not going to get better even if he got the proper nutrition….

I requested that he consider a feeding tube for Ahmed or TPN or something…. I felt that it would at least give Ahmed enough energy so that he could sit and hold a conversation with us. He outright refused. He said that Ahmed probably had a fistula between the trachea and esophagus and that the last CT scan showed that the cancer had spread throughout his body and that Iressa was no longer working. He said “There is nothing else that can be done and I am NOT going to address nutrition here…. You want him to live but he is not going to….you just need to accept the facts and keep him comfortable…. You should increase his morphine to give it around the clock instead of as needed.”

Now when I reminded him that, although we had the injectible morphine he had previously prescribed for Ahmed, Ahmed does not like the effect and adamantly refuses it. He told me that he was going to have the social worker contact me about getting me some help in the form of hospice….and while it is true I have been a homecare nurse for a while, my background is in ER, OB/GYN and Mother/Baby nursing. The only thing I know about hospice is that it is used in end of life cases and that in order to qualify you must stop all treatment and if you change your mind later after you have had hospice for a while, for instance if maybe some new drug comes out and it is worth a try…. Well you can forget about it because the insurance doesn’t have to pay for treatment after they have paid for hospice….

I told Dr. C. that I did not need hospice and that we now had a lot of family around to help and support… and not just ANY family but remember my mom and my sister have been CNAs for many years and my sister is 2 exams away from HER nursing license as an RN. He told me that I needed to stop thinking about myself and what was good for me and to think about what was best for Ahmed. He said he absolutely needed the morphine to make him comfortable…. I again told him that my husband refuses it, that he has not had much pain and the pain he does have is controlled by percocet… He said that is why he thinks I MUST get hospice in here because they can convince him to take the morphine.

I was getting more and more frustrated with this conversation….and came right out and said, “ I called you to address my husbands nutritional status and request help for that in order to give him more energy not load him up on morphine so he sleeps all day….” I told him we will not believe the surgeons “take” on things until we hear it from another opinion…. After all I have 2 very different opinions from the same week…. Dr C said in his opinion Dr F was correct and that I needed to “…. accept the fact…. and stop trying to keep your husband alive.” He said “I don’t think you understand the reality of the disease.”

I told him I understand very clearly the reality of this disease…. Unfortunately I have understood this since April when we were diagnosed…. that is not the issue here…. Should we have stopped trying in April because of “the reality of this disease”??? Why then does ANYONE/ANYWHERE ever accept ANY KIND of treatment if they have been diagnosed with this horrid disease…. If I have to answer that question I will say, “Just because you are diagnosed with a disease such as this, it doesn’t mean your dying…. I have told my husband multiple times whenever anyone says he is dying…. I am looking at you now and what I see is someone LIVING. LIVING with Lung Cancer. LIVING with the reality that lung cancer is a terminal illness. LIVING with all the symptoms and physical changes this disease causes. But the fact of the matter is that right now at this very moment you are none-the-less LIVING. LIVING, BREATHING, COMMUNICATING, ADVISING, TEACHING, COMFORTING and LOVING. I call that LIVING! “

The real issue here is I cannot sit by and watch my husband starve to death…. I have had patients in the hospital on feeding tubes and TPN that had no brain activity yet I am given no valid reason why my husband cannot receive the same treatment…in spite of the fact that he is alert and oriented and begging me not to give up on him and saying “…if only I could eat, maybe I would have the energy to sit up…”

I told Dr. C. that until God decides it is so…. I will never give up on my husband. I told him if we were talking about comfort measures then food and nutrition should be considered a comfort measure…. Am I wrong here????

He told me that it would not provide comfort and would only PROLONG LIFE!!!! Who is he to decide how long life should be???? We have never expressed to him that Ahmed intended to do anything but fight this disease until God takes that right from him…. NO DNR order was ever discussed never mind signed. Why does this doc think he can take these decisions away from us???

The conversation with Dr C ended with me feeling like “Now what do I do?” I felt like something was wrong here…. I felt like we lost our doctor….after all he was refusing to treat Ahmed…. He also had refused to give Ahmed blood or Procrit in spite of a hemoglobin level of 8. That might also have contributed to his weakness and decreased energy…. You think? Without resolution and without a doc who had compassion or respect for Ahmed’s wishes, I couldn’t help but feel alone, abandoned.

I immediately called up to Boston and my mom Fed Ex’d all the CT scans from August to present to Dana Farber in Boston. I spoke with Dr. H after he reviewed ALL the CT scans…. He was so excited to hear from us and especially because the Iressa was working. He said he would never have stopped the Iressa (at this point Ahmed hadn’t taken it for 12 days) He agreed with me that nutrition should be addressed possibly through a G tube or TPN. He was willing to see Ahmed and assume responsibility for his care.

So we made an appt to go up to Boston.

On November 8th, my aunt got up at 5am to go to the bathroom and while she was entering fidgeting for the light….Ahmed’s mother came up behind her (I guess in an attempt to offer unsolicited help in finding the light) reached her arm around the front of my aunt without ever saying anything and she scared her…..my aunt fell to the floor and began crying for my mom…. Ahmed’s mom tried to quiet her down and help her up….When my mom got into the bathroom, Ahmed’s mother was saying my aunt got dizzy and fell…. My aunt told the other story….

In any event 911 was called, my mom was off to the ER with my aunt only to discover a hip that had broken in 3 places. Surgery was performed that evening and my aunt has been in the hospital ever since. My mom has been running back and forth so she doesn’t feel abandoned up there.

In the meantime, Ahmed’s mother was causing him to get more and more distressed and he told me that it would be better if she weren’t here. So I used Boston as an excuse to bow out gracefully of a difficult situation. I had my sister explain to her (she speaks better Arabic than I do) that we had to take Ahmed to a doctors visit at a hospital that was 5-6 hours away and that she needed to call Ahmed’s older brother to pick her up to go stay with them until Ahmed was feeling better. Now in spite of all that has happened I felt guilty, because after all this is Ahmed's mother..... I hate this whole situation.... Call me crazy, but I was the one who pressured his family into arranging for his mother to come.... I was afraid if anything happened that he needed to see his mother.... I had no idea this would happen.

Well, you know that all h**l broke loose. Calls were made back and forth for several hours while my mother in law paced the house, wailing and waving her hands, talking to me a mile a minute in her language, I didn’t even try to understand her…. It was obvious she was not pleased with me. She called my brother in law and he was refusing to come get her. He told her that she should insist on coming with us…. But with the help of my family, I stood my ground and someone eventually came to get her…. I am not sure whether it was my brother in law or Ahmed’s cousin. When they got here, they called from a cell phone and told her to wait outside…. No one ever asked how he was doing or inquired about the details of the doc in Boston. Hmmm….

So now I had a lot of time to get things done…. I got on the phone and ordered a hospital bed, wheelchair and shower chair…. Being a homecare nurse, I know a lot of the local resources so it makes it easier to just do it myself…… however, when they called to get the oncologist to sign the orders….he was refusing… he had the social worker and 2 nurses call me from his office saying that I MUST get these items through HOSPICE…. WHAT !!!!?????!!!!! I am a homecare nurse and I have NEVER seen such a thing…. We have patients and their families all the time making calls for themselves…. We invite it…..

After a couple of hours of what felt like high pressured sales pitches for accepting hospice….these people are relentless….. so I would have help “accepting” that my husband was “dying” and that hospice would help me to “understand why heroic measures should not be taken”….. All of these calls are coming out of the med onc’s office mind you…. Now I don’t know, I have only been an RN since April 2003, before that I was a paramedic, and before that I was a medical assistant for a few years in OB/GYN…. During nursing school I was a student nurse on a mother/baby unit…. So I guess in many situations I am somewhat inexperienced as an RN.

As a HUMAN BEING though, I find it hard to believe that the industry to which my career belongs, could think so differently and seem so cold. I know that from their perspective they are all well meaning, but well meaning or not I wish they would HEAR my husband’s wishes and RESPECT them. I wish they didn’t view faith in God as not accepting of the facts…. I wish they didn’t try to take away every ounce of hope you have at every corner…. I wish they would leave our hopes and prayers intact until God tells us it’s over…. After all it’s all we have left.

I tactfully explained to all of the sales people that we were not interested in talking about hospice and that I had plenty of help and emotional support at home…. I attempted once again to address the blood and the nutrition issues to no avail.

Over the weekend Ahmed was doing a little better and trying desperately to drink some Ensure shakes…. The first day he managed to get 1 whole shake in even (350 calories) though it took an entire day…. Sip by painstaking sip….. too weak still to hold the cup…. I sat beside him most of the day, holding his hand and offering him sips…. I told him that if it was too difficult to swallow then try to hold the sip in his mouth and “absorb” it slowly…. It seemed to work…. It made Ahmed optimistic that maybe he could get this nutrition if he tried…. My mother, Tariq and my sister all took turns offering him sips to give me breaks….

That afternoon Ahmed coughed up something that looked fleshy….. it was different than anything we had seen previously…. When I called the on call onc, he said to save it in a sterile cup in the freezer and then bring it in on Monday to send to pathology…. So I did….. but when my sister brought it in on Monday , Dr. C. told her he was not going to send it because it didn’t matter what it was….. he told her, while she was standing in the hallway, that “Ahmed is dying, you people want to make him live but you’re not going to.”…. my sister continued to inquire why he was “writing us off”…. He got mad and told her to get out of his office…..

The next several days Ahmed continued to increase the amount of shakes , sip by sip, and over this past week he has even started to eat solid food again….. THANK GOD he is back up to about 1500 – 1800 calories/day…. I would like to see him get to 2000+ but for now I am grateful…..

Mother in law came to visit last Sunday, she stayed about 45 minutes, crying and wailing the whole time…. Leaned over my husband as if to kiss him and started again….. my sister came to sit beside me and Ahmed and then my mother in law walked out of the house crying…. My brother in law got up and said his mother was returning to Egypt on Friday…… They left and no one ever called all week to see how everything was….. On Friday morning, I called them to see if they were stopping by on the way to the airport, (I know I’m looking for it) but got an answering machine…. When they called back, I let Tariq take the call…. He told me they said that Ahmed’s mother was leaving on Sunday (tomorrow). So we are anxiously awaiting the final visit….

In the meantime…I guess they must have told Ahmed’s younger brother in Egypt that I did SOMETHING wrong because I have been getting threatening emails and phone calls stating that I better call Egypt to explain myself or else….. because I will someday have to meet them face to face…… for the first time in my entire life I feel afraid…. I don’t know what they are capable of….. they do scare me….. I am just praying that they all leave me alone….. I have held back from calling the police so far because I think it would only upset my husband and the whole situation....I guess if I felt threatened in their presence I might not have a choice.... but it is not something I would do easily....

Thursday I took Ahmed to Boston….. we saw Dr H, the med onc at Dana Farber and Dr M the thoracic surgeon…he is actually the head of the lung transplant unit there…. Anyway they both came in a spoke with us….. They said that disease DEFINITELY had not progressed in fact there were only a couple of small nodes in right lung that “we would not worry about in a hundred years”…. They said they did not see any evidence of the mets to the liver, bone or adrenals that had been previously seen…. They said they absolutely did not agree that Ahmed was ready for hospice…. They were very excited about the response to Iressa…. They said this was a fabulous response…. They told us that “the problem is that perhaps Iressa worked too good.”

The area that had previously been diagnosed as an abscess was actually a cavity where the primary tumor had been….Iressa shrunk the tumor so effectively that it left this raw, bleeding cavity that pus and secretions continue to accumulate in…. This is our real problem according to the Boston docs…. They said that the walls of the bronchus leading to the lower lobe had deteriorated with the deterioration of the tumor which had previously invaded it and therefore the airway is compromised…. They said surgery would not be possible because of the risks. They told us that our best hope is that if scar tissue can form and fill that area in then eventually the pneumonia would be able to clear… the one concern they had was that on previous CT scans you could see the involvement of the pulmonary artery…. It has never been very clear as to what extent the artery was involved…. They say it is difficult to say whether the cancer was pressing on the artery or had actually begun to invade it…. The concern is that if the artery had been extensively involved and the Iressa continues to work so well, then it could potentially take the walls of that artery with it which of course would not be good…. However when they look at this latest scan they cannot see that involvement so they said we can just hope that there is nothing to worry about…

We are going to stay with the docs in Boston for now…. They are suggesting working with the local onc… but we are reluctant to trust anymore…. Maybe we will look for a new local onc, not sure yet…. PT will start on Monday to get him moving and up from the bed to help mobilize the secretion in an attempt to clear the pneumonia and they were pleased for now about the amount of calories Ahmed is managing to get in….

Well that is pretty much where we are at for now…..

Much awaiting tomorrow’s final visit (hoping she doesn’t change her mind and decide to stay)…..

I will try to post as often as possible, time permitting…. It is much easier to do this day by day than to try to recap the last month…..

Anyway, thanks again for all of your support…. I only hope I am able to give back a fraction of what you guys have given me….

WITH EVERY DIFFICULTY ~ THERE IS RELIEF………Lisa :?

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Lisa,

It sounds like this whole nightmare could be coming to an end - that is what I am praying for. I also hope that if you continue to feel threatened by the local family as well as those overseas that you will report the harrassment to the police. I believe in expecting the best but preparing for the worst, so I hope you will keep copies of the threatening emails as well as keep a diary of all this. I can tell from our phone conversation that you are intelligent as well as diligent, and I'm sure you will remain alert and cautious.

As to Ahmed, it's so good to hear that he is eating and that he has been given hope for recovery. It's so sad that the other doctors weren't willing to even provide him with comfort care, short of hospice. If not for your diligence, Ahmed wouldn't stand a chance. And also, I thank God for your wonderful, upbeat family. Their presence and sacrifice is a blessing.

I'm glad to hear that Tariq is coping well, too. No 14-year-old (or anybody any age, actually) should have to see, hear, feel and experience what this young man has. I'm grateful to know that he is such a strong young man and that he is close enough to you and Ahmed to talk to you about his feelings.

May God bless you with His love, strength and comfort.

Love,

Peggy

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Lisa,

I am so sorry to hear all that you are going through. Ahmed is so blessed to have you in his corner. You are so strong and this strength will get you and Ahmed through this. I can't believe the difference in opinions of the doctors. What a nightmare!

You are in my prayers.

TAnn

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Please always remember that your family's safety is top priority....over any sense of obligation you feel you have to his family...or obligation you feel to protect your husband at this time when he is so fragile....

Show your husband that you can take care of yourself and your son by getting this people away from you--for good. Even if that means calling the police, getting restraining orders...etc...

If god forbid something did happen to your husband...how do you think they will be once he is gone?...even more angry and it will be an all out war directed at you from everyone on that side. I think you should protect your family now.

More positively, is the way your husband seems to be bouncing back! You have great tenacity when it comes to finding the medical care your husband deserves and he is so lucky for that! I hope and pray he continues to improve and regain his health more each day. And I pray that his medical team keep showing compassion and diligence in caring for him.

Hang in there---you are doing so much--keep asking for help and keep standing up for yourself and fighting for your family.

Many hugs and prayers,

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Lisa,

Your story is so filled with emotions that I hardly know what to say or how to begin. You are certainly one strong person and your story has really inspired me in many ways. Just when I'm thinking how hard this is and I'm on the pitty pot, i will think about you. Ahmed, Tariq and your family are fortunate to have you. It seems that Ahmed's family hasn't taken the time to see all that you have done for him. They do sound very selfish indeed. I'm glad you have your loving and supportive family there to support you. I just want you to know that your story is very inspirational. It shows that you have to be on top of the medical situation you are given , use your own common sense, follow your gut feelings and think about living not dying. Thank you Lisa and God Bless you and your family. Know that you are in my prayers.

sue

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Lisa-

I am so sorry about your nightmare! Try to ignore the in-laws and don't feel guilty about pushing them away, they shouldn't be acting this way! It's their fault if they don't get to spend time with your husband!

I'm speechless about the whole situation. Try to keep your chin up, your a very strong woman and it has to get better!

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Lisa,

YOU are a SURVIVOR.

I cannot believe the nightmare you have lived through.

Ahmed's family scares even me.

I am amazed by your strength, wisdom, and fighting spirit.

Your family are wonderful. I am sorry about your aunt.

I am hoping that the Iressa continues to work for Ahmed.

I am basically overwhelmed by your story and have not one word of

wisdom to offer to you.

I am in awe of the job that you are doing...

We are here to listen and to send our love to you and to your family.

Cindi o'h

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Dear Lisa & Tariq,

I can only repeat what Sue said; you are an inspiration and hearing your story certainly puts my situation in perspective. Please take care of yourself and your family and let us know what we can do to help. As always, prayers are being said all over the world for you and yours.

God bless.

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Dear Lisa~

Boy do we have a lot in common. Listen to Katie when she tells you your family is your top priority...not his...your family, Ahmed and Tariq. For years I did much as you have done, I gave my mother-in-law too much credit. I thought that somewhere inside there was actually a normal person. I also thought that it was important that he see his mother and she him (big mistake). Someone mentioned selfishness and that hits the nail on the head. They don't care about Ahmed, his health, you or Tarig. As you have said, they don't even ask about him. So stop this now and stand up to his family. Believe me when I tell you that once you do they will back off.

One day after John's diagnosis my mother-in-law went too far. I had put up with her hurting me and my children for a long time but when she turned on her son, the gloves were off. I let her have it and I mean good. I told her she was selfish and only thought of herself, and on and on. Once I did that she stopped (granted she probably thought I had come undone but hey it worked). Now if you would stand up and tell your mother-in-law (and the others) she is not welcome in your home until Ahmed is up to her visits, it will stop. I promise you it will get better if you show them they can't push you around. They are only doing it because they are getting away with it.

I am so glad Ahmed is improving. Many on here recommend the Weight Gainer 2200 powder that you can mix in with drinks to gain weight. Also, the Ensure comes in a pudding if you think it might be easier for him to get it down that way.

I wish you all the best Liisa I really do. And please come back and tell us that she made that plane today. :wink:

Rochelle

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Lisa,Glad to hear Ahmed is gaining weight and eating now.Also glad you and your family are such fighters.That last dr. should be ashamed and go find another line of work.Do yourself a favor and keep MIL away as the others have said.Sending prayers that Ahmed continues to improve & you & your family have a better environment to help him with the battle you all are facing.

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Lisa-

Oh my God I cannot imagine what your life has been like recently!!!

I am thankful that you have found oncologoists in Boston who are willing to treat Ahmed... How awful that your Onc had written him off... ESPECIALLY when it appears that his cancer is not progressing at all. It is really scarey that we are put at the mercy of these doctors sometimes. Thank God you did not listen and you were so pro-active for your husband. You will be in my prayers and I pray that God continues to give you the strength to be your husbands best advocate.... Love, Sharon

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Dear Lisa,

My head is absolutely whirling from your story. But SHE'S GONE! And you have athe good doctors in Boston to rely on. I assume your oncologist is at Yale -- I'm appalled at his reaction to the situation. THe people at Dana Ferber are probably right -- you DO need a local oncologist but not that one. We're working with people in Middletown, the Middlesex Oncology group out of Middlesex hospital, and have been blown away by their care, their concern and their professionalism. I'm sure you've investigated other doctors with your connections there, but if you want the name of ours, I'd be happy to give it to you -- I can't say enough for him.

Keep on feeding Ahmed and keep on fighting. You are in my thoughts and prayers.

Ellen

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Lisa

I am like many others, totally speechless. Almost like a novel and cant wait for part 3 until you realize thats this is real and someone is really living this life right now. I just cannot imagine how you have done it, I would have lost it days ago.

Hopefully now that she has flown, you can get back to caring for Ahmed.

Keep us posted and you and your family are in my prayers

Kim

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