Hello Family & Friends, This website is designed to keep you all informed of Christian's progress. So check back every week or so to find out how our Christian Kirby is doing. My husband Ismael & I feel that there is just no way for us to show how grateful and blessed we are to have you all in our lives. GOD BLESS, Ismael, Leslie, Ismaelito, Christian, Noah, Isabella & Baby Hernández

Nov 16 2008

11/16/2008 Enjoying the Homelife

Christian has been doing amazingly well. He has been nausea, vomit, and pain free for weeks now and that has been a blessing in itself. My Mom and I have made it a point to do “fun” activities with kids for the last  couple weeks because Christian is just 7 short days away from going off the UCLA. We went to the “Dancing Waters” in San Pedro (a crowd favorite) 3 times last week and well probably be going again this week too. He has been running, playing, dancing, and wrestling with his Dad & brothers like nothing. 

 I am missing him already and I can’t even describe how I’m feeling right now. It’s hard when I’m dealing with own emotional anguish, and when my other children say how much they miss and want Christian home, it makes it harder. I know that God will get us through this because he’s got us this far in such a short amount of time. I do have to say that the past 10 months have felt like years, because I often question whether events or family gatherings we had last year were done the year before. But enough of my pitty party! We will be celebrating Thanksgiving next Saturday upon Christian’s request. We get excited to see Christian feeling and looking so healthy. It gives us so much hope that one day soon this will all be behind us.

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Nov 07 2008

11/7/2008 Home Now

Christian came home around 11am today. He played video games with Ismaelito and when Noah came home from school, my Mom took all the kids to “The Dancing Waters” in San Pedro. Fernando (Christian’s Godfather/Uncle) and Marina (his Fiance) came over to visit earlier, and now at 10:21pm Ismaelito, Christian, Noah and Bella are watching Kung Fu Panda with my Mom. This will be a fun weekend for all our kids, with a bicycle ride with my Mom and a B-day party for our neighbor John on Saturday, and the movie “Madagascar” on Sunday. We have to get it all in because by next week his counts will have dropped from the chemo and then the following weekend he’ll be admitted to UCLA. He came home telling on and bickering with brothers, so that tells me he’s feeling “normal”. I guess I can’t complain too much about the constant arguing. ;)

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Nov 04 2008

11/4/2008 Chemo Time

Christian went back to Miller’s on Sunday November 2, 2008 for more chemo. He shed a few tears as my Mom drove off with him. My husband and I felt heart broken as we watched him leave, you know 9 1/2 months into this and we never get used to having him gone. Yesterday my Mom called me early in the morning to tell me that he did not need any extra hydration (like he’s need before) and they were going to start the chemo early. I have to say that we have been so lucky because that crippling bone pain he had a few weeks ago has gone and other than that he has been great. There have not been any set backs, and he’s eating and drinking plenty. I know that God is preparing his little body for what’s to come and that is so wonderful.

His nurse told me he’ll finish his High Dose Methotrexate (chemo) at 12 noon today. After that he’ll get this preventative medicine. After that, he has 48 hours to clear his body of the chemo. It’s 11:40am right now and he’s in the playroom having fun with the video games. The playroom director told me he was outside the door 10 minutes before opening time, so eager to get in there and play. It’s great seeing him with energy and looking forward to something .

I got a call last week from the Nurse Practioner at UCLA saying that they’re looking to admit him on Sunday November 23, 2008. The date was changed due to the Veteren’s Day holiday. That is just fine with us, we love having him home and being a complete family.

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Oct 29 2008

10/29/2008

Christian went to clinic yesterday and his counts are good enough for his next round of chemo. He’ll be going to the hospital on Sunday afternoon. I got a call from the Nurse Practitioner at UCLA today and with the Veterans Day holiday coming up his admittance date was moved to November 23, 2008. He’ll get 3 days of chemo and 4 days of total body radiation. In the mean time he is so excited about Halloween. His Tita Lupe made him his costume and he looks awesome in it. He’ll be “Vegeto” from Dragon Ball Z, Ismaelito will be Joker, Noah will be a Jedi, Isabella will be Alice in Wonderland and Victoria will be a little sheep. Can’t wait for Friday

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Oct 26 2008

10/27/2008

Let me start off by saying we had a good weekend. On Saturday we took family pictures at a park and after that, Ismael took the boys to his brother Arsenio’s house and they had a blast on their Giant trampoline. Sunday we went to mass @ 7:30am as usual and later on they went back to Arsenio’s for more trampoline fun. They came home tired and happy from the qulality time spent with their cousins. We want Christian to take good memories with him to the hospital since he’s going to spend the major holidays away from his family this year.  On Tuesday we’ll go to his clinic appointment and we’ll find out when he’ll go in to Miller’s for one last round of Chemo before his transplant.

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Oct 23 2008

10/22/2008

Christian was discharged on Thursday 10/16/08 around 5pm. He was so happy knowing he’d be attending the Baptism. On Friday 10/17/08, he had a Dental evaluation done as part of the “work up” requirements by UCLA for his transplant. He has pretty good teeth with a small sign of a potential cavity (his first ever). Saturday was the Baptism and we were all eager for that and so glad our whole family would be there together.

During the ceremony he got this sharp pain in stomach that brought him to tears. My Dad quickly took him to Mc Donald’s and as soon as he ate he was fine. Since he’d been on a Steroid medication, Christian is hungry round the clock and tends to get strong hunger pains. On Monday 10/20/08 I took him to get a hearing test which was the last part of the “work up” and I was told his ear drums are working perfectly and he has excellent hearing. When I called my husband to tell him what I was just told he replied, “so why is it when we tell him to do something he doesn’t listen?” ;)    LOL (we’ll never know why)

Tuesday 10/20/08 we went to his clinic at 3pm. Dr. Finkelstein said his counts were terrific and he needs more Inpatient Chemo next week. He told me they’re waiting to hear from UCLA to find out whether or not to do this chemo because it’s a tough one, more High Dose Methotrexate. Cindy told me she’d call me tomorrow with more info, but since I’m so impatient I called as soon as we walked out of the Dr.’s office. I was told that they too would call me tomorrow with more info now that the “work up” requirements were met.

That brings us to today. I got a phone from call from the Nurse Practitioner from UCLA saying Christian will get the HD Methtrexate at Miller’s and then be admitted to UCLA on November 12, 2008. This date is tentative, because we need authorization from our insurance for the transplant and Christian’s counts must come back up before UCLA hits  him with their chemo.  He has his clinic appointment on Tuesday 10/27/08 and then they’ll tell us what day he goes back in. Overall Christian is doing great. He eats all day, he has the cutest peach fuzz for hair, because it’s growing back again. His is funny and goofy and such a joy to be around, even when he snaps at us because we all get on his last nerve and as he says act “annoying”. Well I must go because it is 1am and I’m exhausted.

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Oct 12 2008

10/12/2008 In Patient Again

At 10pm tonight Christian went back to the hospital for more Chemo. I was nursing Victoria in our living room and I watched Christian go to all the rooms to kiss goodbye Noah, Bella and his Dad who were already asleep. Of course he looked like he did not want to leave us, but what can one do? I must say I was proud of him for not crying this time. My wonderful Mom worked so hard today making Tamales for the Baptism, and she just looked exhausted as she packed her bags to go stay with Christian. I can’t stress enough, just how lost I’d be without her.

Tomorrow morning he’ll have an L.P. (chemo in the spine) and a Bone Marrow Biopsy. This means he’ll be waking up at 4am to eat breakfast because he can’t eat or drink anything for 6 hours before the procedure. There have been times when he’s been scheduled at 12 or 1pm and got pushed back till 3pm or later. Imagine that whole time not being able to eat or drink. He’ll also get the high dose Methotrexate tomorrow, and the 48 hour count down will begin. Pray that he clears and is home for the Baptism.

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Oct 08 2008

10/7/2008 Clinic Tuesday

Even though Christian’s counts are good, he’s still in alot of pain. I asked the Dr. if a wheel chair would be necessary, because he can hardly walk without crying and complaining of the pain. He said it might help him out but we have to wait a couple of weeks to see if it’s the Vincristine or the Decadron that are causing the pain. The Dr. says he wants to think it’s the Vincristine because he’s been getting it for the past 3 weeks and Decadron can cause permanant bone damage. So we just have to wait and hope it goes away. Last night @ 12:50am I woke up to the sounds of Christian crying out in pain. I ran to his room where he was crying out to me saying how his ankles and knees hurt. I gave him Norco for pain and rubbed his ankles and knees till about 2:30am. At 3am Victoria woke up and I brought her back to Christian’s room because I did not want to leave his side. In the morning he woke up about 8:30 am and he thanked  me for massaging him and helping him sleep. He’ll be going back to the hospital on Sunday evening for more chemo and some procedures that UCLA is requiring before the transplant. Now we’re just hoping he’ll be home in time for Victoria’s Baptism on Saturday.

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Oct 06 2008

10/6/2008 A Glimpse of What’s to Come

Christian has been so tired lately that’s it’s so hard to see him this way. Today he told my Mom that he did not know why Nature gave him Leukemia. It’s been very stressful here at home, my husband has been “tuned out” ever since we were told Christian’s prognosis is not good without the transplant. I mean even though we know the sad reality of what we’re going through, it’s still painful to hear. We know tougher times are ahead of us, but man it’s been rough lately. I found this info and I want to share it with you so you’ll have an idea of what’s to come. It’s alot so please continue to pray for us and keep Christian in your thoughts.

PREPARATIVE REGIMEN

A patient admitted to the bone marrow transplant unit will first undergo several days of chemotherapy and/or radiation which destroys bone marrow and cancerous cells and makes room for the new bone marrow. This is called the conditioning or preparative regimen. The exact regimen of chemotherapy and/or radiation varies according to the disease being treated and the “protocol” or preferred treatment plan of the facility where the BMT is being performed.

The dosage of chemotherapy and/or radiation given to patients during conditioning is much stronger than dosages administered to patients with the same disease who are not undergoing a BMT. Patients may become weak, irritable and nauseous. Most BMT centers administer anti-nausea medications to minimize discomfort.

THE TRANSPLANT

A day or two following the chemotherapy and/or radiation treatment, the transplant will occur. The bone marrow is infused into the patient intravenously in much the same way that any blood product is given. The transplant is not a surgical procedure. It takes place in the patient’s room, not an operating room.

Patients are checked frequently for signs of fever, chills, hives and chest pains while the bone marrow is being infused. When the transplant is completed, the days and weeks of waiting begin.

ENGRAFTMENT

The two to four weeks immediately following transplant are the most critical. The high-dose chemotherapy and/or radiation given to the patient during conditioning will have destroyed the patient’s bone marrow, crippling the body’s “immune” or defense system. As the patient waits for the transplanted bone marrow to migrate to the cavities of the large bones, set up housekeeping or “engraft,” and begin producing normal blood cells, he or she will be very susceptible to infection and excessive bleeding. Multiple antibiotics and blood transfusions will be administered to the patient to help prevent and fight infection. Transfusions of platelets will be given to prevent bleeding. Allogeneic patients will receive additional medications to prevent and control graft-versus-host disease.

Extraordinary precautions will be taken to minimize the patient’s exposure to viruses and bacteria. Visitors and hospital personnel will wash their hands with antiseptic soap and, in some cases, wear protective gowns, gloves and/or masks while in the patient’s room. Fresh fruits, vegetables, plants and cut flowers will be prohibited in the patient’s room since they often carry fungi and bacteria that pose a risk of infection. When leaving the room, the patient may wear a mask, gown and gloves as a barrier against bacteria and virus, and as a reminder to others that he or she is susceptible to infection. Blood samples will be taken daily to determine whether or not engraftment has occurred and to monitor organ function. When the transplanted bone marrow finally engrafts and begins producing normal blood cells, the patient will gradually be taken off the antibiotics, and blood and platelet transfusions will generally no longer be required. once the bone marrow is producing a sufficient number of healthy red blood cells, white blood cells and platelets, the patient will be discharged from the hospital, provided no other complications have developed.

WHAT A PATIENT FEELS DURING THE TRANSPLANT

A bone marrow transplant is a physically, emotionally, and psychologically taxing procedure for both the patient and family. A patient needs and should seek as much help as possible to cope with the experience.

The bone marrow transplant is a debilitating experience. Imagine the symptoms of a severe case of the flu - nausea, vomiting, fever, diarrhea, extreme weakness. Now imagine what it’s like to cope with the symptoms not just for several days, but for several weeks. That approximates what a BMT patient experiences during hospitalization.

During this period the patient will feel very sick and weak. Walking, sitting up in bed for long periods of time, reading books, talking on the phone, visiting with friends or even watching TV may require more energy than the patient has to spare.

Complications can develop after a bone marrow transplant such as infection, bleeding, graft-versus-host disease, or liver disease, which can create additional discomfort. The pain, however, is usually controllable by medication. In addition, mouth sores can develop that make eating and swallowing uncomfortable. Temporary mental confusion sometimes occurs and can be quite frightening for the patient who may not realize it’s only temporary. The medical staff will help the patient deal with these problems.

HANDLING EMOTIONAL STRESS

Patients undergoing a transplant can feel quite isolated. The special precautions taken to guard against infection while the immune system is impaired can leave a patient feeling detached from the rest of the world and cut off from normal human contact. The patient is housed in a private room, sometimes with special air-filtering equipment to purify the air.

The long weeks of waiting for the transplanted marrow to engraft, for blood counts to return to safe levels, and for side effects to disappear increase the emotional trauma. Recovery can be like a roller coaster ride: one day a patient may feel much better, only to awake the next day feeling as sick as ever.

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Sep 30 2008

9/30/2008 AMAZING NEWS!

I am so happy to report that Victoria Grace’ Stem Cells are a PERFECT MATCH for Christian. She has all the stem cells Christian needs in her umbilical cord so she doesn’t have to under go any type of surgery. We were told in detail of all the risks involved from the transplant and mostly all are life threatening, but we were also told that the type of Leukemia he has is so aggressive that chemotherapy alone will not cure him and he’ll have less than a 50% chance of survival if doesn’t get the transplant. That bit of information pretty much made up our minds. He’ll probably go into the hospital the 1st week of November and will be there for about 3 months. I’ll update more later, right now Victoria is crying and I have to go.

Thanks for all your prayers and I ask you to continue praying for us.

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