October 2007 Archives
And what a way to celebrate with the Red Sox win yesterday!
Three years ago today Andy received Sofia's stem cells.
Here are some pictures from that day.
Sofia visits Andy prior to her procedure:
Sofia preop:
Andy before receiving Sofia's stem cells:
Sofia after the procedure:
Michelle Lanni, bag of stem cells and Andy:
Andy a few minutes after the infusion started (nobody told him to do this):
This is what I wrote 1095 days ago:
21:35 SLEEP
21:43 DIAPER CHANGE
22:04 VITAL SIGNS
23:15 MED - Senna
23:33 PUSHING - DIAPER CHANGE
23:57 PUSHING - NAUSEA MILD
00:23 SCREAMING - PUSHING - NAUSEA
00:36 PUSHING
00:54 PUSHING - DIAPER - NAUSEA
01:16 PUSHING - DIAPER - NAUSEA
01:26 PUSHING
01:32 PUSHING
01:37 PUSHING - TALKING "ME QUIERO DORMIR"
01:55 NURSE IN ROOM CHECKS PUMPS
01:57 NURSE LEAVES ROOM
02:00 PUSHING - SCREAMING "NO!"
02:07 PUSHING - NAUSEA - VOMIT
02:09 CALLED NURSE
02:12 NURSE IN ROOM - ASKED FOR NAUSEA MED
02:19 MED - Adavan
02:34 PUMP ALARM - CALLED NURSE
02:35 NURSE IN ROOM - MED FLUSH
02:35 DIAPER CHANGE
02:39 PUSHING
02:43 PUSHING
02:54 NURSE IN ROOM - CHECKS PUMPS
02:57 PUMP BEEPING - I FIXED THE PUMP
03:20 SCREAMING "NO, NO, NO"
03:21 NURSE IN ROOM - VITAL SIGNS bp = 110/56
03:47 PUMP BEEPING CALLED NURSE
03:56 PUSHING
04:27 NURSE IN ROOM - MED FOSCARNET
04:50 PUSHING - DIAPER CHANGE
05:07 PUMP BEEPING CALLED NURSE
05:10 TALKING "APAGA TU COMPU"
05:12 NURSE IN ROOM
05:45 DIAPER CHANGE - PUSHING - TALKING "YA ME QUIERO DORMIR"
06:00 PUSHING
06:03 PUMP BEEPING CALLED NURSE
06:15 NURSE IN ROOM - BLOOD SAMPLEDr. Nicholas Haining and a fellow came in the room at 9:00 AM.
Although we had a tough night things are looking good, "this is as good as it gets" according to Dr. Haining. The constipation medications are starting to work. Andy may have this type of stomach disconfort for the next couple of days. Blood counts are looking OK although his white blood cell count is a little higher than yesterday. We expect low blood counts in a week or two weeks.
Sofia needs to visit the clinic today for a blood test.
Hanging in there. We're on day -3. Three more days for DAY ZERO. His ANC today was 2,500, a little higher than yesterday. His White Blood Cell Count was 4.35. Andy is incredibly patient and thanks to his patience he will win the battle against primary immune deficiency. He cooperates with doctors, nurses, clinical assistants. He also has a very high pain and discomfort tolerance which can sometimes trick anyone who doesn't know him well. We didn't sleep much yesterday, he constantly woke up because he needed to go to the bathroom. The constipation medications are starting to help but only with the pushing part. And besides that he's getting a lot of IV fluids that make him pee a lot. Last night I was worried about this 8 day constipation. This is what I was thinking at 4:00 am in the morning: I think that the main cause is the calcium he's getting to cover the Foscarnet side effect. I also have happy thoughts that maybe his colitis is cured with the chemo. But we rather "hope for the best and act for the worst". We're trying with Myralax and Senna with no results. I'm worried because we're expecting the low blood counts soon and I don't want him with low platelets and an intestinal occlusion. Andy's weight today was 17.8 kg. Dr. Nicholas Haining, fellows and residents came into the room in the morning at around 9:00 am. Dr. Haining ordered some x-rays of his stomach; we talked about intravenous (IV) calcium. Turns out that IV calcium is tricky but he needs the calcium due to Foscarnet. The x-ray trip to the 2nd floor was a major event. First time he leaves room 613 in 7 days. He had to wear a mask to leave the room and go take the "picture". Andy doesn't like to wear hospital masks, so we used his Power Rangers mask (red) and that worked. Andy received the second dose of cyclophosphamide at around 10:30 am. When the chemo ended he fell asleep for a while, he was not feeling well. He took a bath in the afternoon at around 6:00 pm. He was joking with Paulina and Grandma Marilu after his shower. We ask you to keep us on your prayers. Chemo should only make way for new cells. The new cells should engraft rapidly and give Andy a new immune system and his chance to live to be an adult. No CMV for at least 140 more days. ATF
This is what I wrote 1095 days ago:
Doing well. We're on day -4. Four more days to reach DAY ZERO. Day Zero is the day that stem cells are infused through the central venous line. He will most likely receive the cells between early afternoon and night of Friday Oct. 29th. His ANC today was 2,460, a little higher than yesterday. We expect low blood counts in about a week. Dr. Nicholas Haining and Melissa O'Connor, residents and fellows came into the room at about 8:30 AM on doctors rounds. Dr. Haining is a straight forward doctor, and maybe that's why Andy likes him. We commented about Andy's constipation and about Sofia's appointment. He checked Andy's mouth and felt his stomach. Andy received his first dose of the second type of chemo, cyclophosphamide at around 10:30 AM. Andy's still constipated.. 7 days now. He's getting Miralax and Senna. We're trying to reach Dr. Samuel Nurko, motility expert, who knows Andy well. Andy only drank 8 oz. of his formula today, this is due to the following: a) He's getting a lot of IV fluids to cover side effects of the chemo today so he's not thirsty or hungry. b) He's constipated because of the calcium (Tums) he's getting to cover side effects of the CMV antiviral he's getting. c) He has some nausea, side effect of the chemo. Andy's weight today 17.7 kg in the morning and 17.6 kg in the afternoon. They're checking his weight twice a day for some chemo calculations. This is our 36th day in the hospital, clinical assistants measure Andy's vital signs every four hours. This means that since we arrived here on Sept. 20th. he's had his vital signs checked at least 200 times, these are blood pressure, temperature and oxigen. Andy had a bath at around 6:00 PM. His central line looks OK. Sofia came in at 11:30, Sheri Barnett, Nurse Practitioner did the interview at the Pre-Operative Clinic at Children's Hospital Boston.. Grandma Lupia and Marilu stayed with Andy in his room while Paulina and I took Sofia to the clinic.
I had the chance to spend some time with Sofia at the Patient Entretainment Center at Children's. She's great, she starts dancing everytime she hears music or any rithmic sound. Her smile is my energy recharger!! Today's visits included: - Mrs. Whalen visited at 9:30 AM. Thank you for the computer games, books and magazines! - Karen Fraser who we know from when we first arrived to Children's; from 7E visited today. - Baldwin the Eagle visited Andy today! (he just stood by the door) and a Boston College Football player and a swimmer. Baldwin looked much more shorter today than on his previous visit. - Hospital Volunteers.
Doing well. Vamos Andy! Vamos Andy! We're on day -5. Five more days until Andy receives Sofia's cells. Andy's weight today 17.2 kg. Still constipated, we switched to a new medication, I hope this one helps. Yesterday I asked Andy why did he think he was not going to the bathroom and he told me, "Papa, mi caca se fue a la luna". Today was Andy's rest day, he didn't get any chemo. He's still on the CMV treatment, and gets all the other medications through his stomach. His ANC today was a little higher than yesterday to 2050. His white blood count is 4.07. We expect his low blood counts in about a week. We played some baseball in the room, although it gets a little complicated because he can't touch objects that fall in the floor before they're cleaned. He also played with seringes and water, played XBox, and with the computer. Grandma Marilu spent the day with Andy. Grandma Lupita spent the day with Sofia at home. SofÃa has her preop appointment tomorrow at 11:30 AM. This weekend was the Head of the Charles Regatta, more info here. Game 2 of the The World Series, at Fenway Park, a few blocks away from the hospital. Go Red Sox! So what is chemotherapy? Its meant to kill stem cells in the bone marrow, but it also destroys some normal cells, particularly those which grow and divide fast like blood cells, cells from the gastrointestinal tract and hair cells. That is why the most common side effects are low blood counts, eating and digestion problems and hair loss. The low blood counts are expected 1 to 2 weeks after receiving the chemo treatment.
This is what I wrote 1095 days ago:
Doing well. We're on day -6. Six days left until Andy receives Sofia's cells. Andy's weight today was 17.3 kg. He's still constipated, we havent seen any stool in 5 days, he got two more doses of Miralax (website). He's still drinking his Pediatric EO28 Formula but with more nausea. He received a blood transfusion at 2:00 am in the morning. His hematocrit today is 38, up from 24 yesterday; his cheeks look red. Andy has received 15 doses of chemo (Busulfan), he had more nausea today. There's 1 more dose of Busulfan to go tonight at 12:00 am, tomorrow he will rest and on Monday he gets the other chemo for 4 more days. His ANC (Absolute Neutrophil Count) today is 1,680. Yesterday it was 2,220. He took a bath on the bathroom sink, his central line dressing and site look OK. This is our 34th consecutive day in the hospital. I've learned intresting things about myself in the last 34 days, for example now I know that I like to shower on 37 degrees centigrade temperature water (there's a thermostat on the hallway bathroom shower). Both grandmas are here. Lupita'>Lupita spent the day with Sofia and Marilu'>Marilu with Andy. This is a picture of some of the medications Andy receives in the morning through his stomach:
Nurses at the Stem Cell Transplant Unit at Children's 6W take extraordinary good care of Andy. This is undoubtedly the best place in the world where he could be, and we're very fortunate for that. Nurses know about every single detail regarding Andy's care. There are at least 13 different types of medications that he gets during the day and nurses handle them without any problem. Some of them are intravenous and others go through his stomach. Names of the nurses are listed on this blog, 'Nurse of the Day' and 'Nurse of the Night', they're on 12 hour shifts. ATF
This is what I wrote 1095 days ago:
We're on day -7. Andy will receive Sofia's cells in 7 days. Andy's weight today was 17.3 kg. He's still constipated and will get some Miralax today. His hematocrit this morning was 24, the minimum allowed before a transfusion is 25, so he's getting a blood transfusion as soon as there's a time slot to do it. The chemo, antiviral, gammaglobulin anti-nausea and anti-seizure meds take all the time available during the day for his 2 lumen central line. Seems that the only central line availability is at 2:00 am. He's getting one unit of blood that is around 200 ml. Andy has received 11 doses of chemo (Busulfan); we still don't see any side effects other than a little bit of nausea in the morning around 11:00 am. He's still drinking all of his Pediatric EO28 Formula. There are 5 more doses of Busulfan to go, then one day of rest and then 4 more days of the other type of chemo. Andy gets a medication to prevent seizures (convulsions) that are a side effect of the chemo (Busulfan), the name of the medication is Fosphenytoin. Turns out that every time he gets the medication at night his bottom starts itching. We prefer the itchiness to the seizures, final answer. Andy's ANC (Absolute Neutrophil Count) today is 2,220 There's a very high risk of infection when the ANC is lower than 500. Andy will most likely be around ANC=0 when he receives Sofiass cells. Wesre taking a lot of precautions on his room to prevent infections. We're more or less used to detect infectious disease sources because of the primary immune deficiency. We use a lot of Purell, and we do our own floor cleaning, we have our own Clorox Ready Mop (website) and I use it about 3 times a day to clean the floor of room 613. Dr. Sung-Yun Pai (website), called today to ask if Andy could donate 2ml. of blood for research under the supervision of Dr. Raif S. Geha. This sample will help another boy who has gastrointestinal related problems. Sofia had a rough day today. I have to say that Sofia is as brave as his brother, she has all of our love and admiration for doing this. And this is for a very good cause. Turns out that by law all bone marrow donors need some screening blood tests prior to the transplant. I asked Robin the nurse at Jimmy Fund Clinic if they could break the law but she said they couldn't. We did the tests prior to Andy's hospitalization, but by 'state requirement' those test expire in 30 days. So we had to do them all over again. Phlebotomists at Children's tried 6 times to get the blood samples needed with no luck. It was then that they called George R. from the CAT/CR. I don't know why we didnt think about George in the first place. George made our day! It was on his first try that he was able to get the samples needed. George has an incredible ability, and I've asked him how he does it and his only response has been "I let gravity do the job". George deserves a statue! I told him that, and he said he'd rather have a house on an island. Thank you again George! Sofia weight today was 8.3 and her hematocrit 38. ATF
----
The Absolut Neutrophil Count or ANC is the total number of neutrophils in your white blood cell count. The lower the ANC the higher the risk of infection. When the ANC drops below 500 the risk of infection is very high.
The ANC is an important number for two reasons:
1) The ANC determines when chemotherapy can be given
2) The ANC determines when you are neutropenic and at risk of infections.-------
Doing well. We're on day -8. Clinical Assistant came into the room at 8:00 am to get Andy's weight (16.9 kg) and vital signs. Andy went back to sleep. We're signed up with Father Robert to receive communion, so at around 9:00 am a Chaplain came into the room, we held hands, she said a prayer and gave me communion. I have to say that the prayer and communion is a very encouraging way to start the day. In the meantime Andy was still sleeping. Dr. Haining and the Fellows came into the room at about 9:30. The CMV antigen negative (not found)and the CMV PCR also negative. That's good news but we've learned that "Absence of proof is not a proof of absence". In the morning he spent some time painting, he painted some pillow covers. Melinda, Child Life Specialist who's incharge of the 6W Payroom, has great ideas to keep Andy busy and in a good mood. The Child Life Specialist helps children find ways to express themselves through different activities and play. Andy had physical therapy at around 3:00 pm. He's still drinking his 1.4 liters of Pediatric EO28. He had a chance to be 'disconnected' from the pumps for about 4 hours in the afternoon. He's not allowed to leave his room. He took a bath at around 6:00 pm., his central line site looks fine. There's one thing to note, he's constipated. I haven't seen any stool in about four days. My first theory for the cause of the 'problem' is the calcium he's getting (via his G-Tube)to cover the Foscarnet medication (against CMV); calcium (tums) caused constipation in the past. My second theory is that the combination of IV steroids (that prevent inflammation) and the first doses of chemo (that eliminate part of the immune response) are helping his colitis. This constipation looks different than the ones he's had. It's not a colitis flare related constipation, he seems to be absorbing his formula and he's still drinking 1.4 liters of Pediatric EO28 a day. Andy has received 7 doses of chemo (Busulfan) out of a total of 16, we still don't see any side effects. We're still asking for prayers and positive thoughts so that chemo only does it's intended job and it doesnt go any further. We just need to open path for the cells that Sofia donated. We received a call from The Jimmy Fund Clinic, Sofia has an appointment at the clinic tomorrow @ 11:00am. ATF
This is what I wrote 1095 days ago:
Doing well. This update comes when Andy has received 3 doses of chemo out of 20 (16 of busulfan and 4 of the other) according to the original stem cell transplant plan. He will receive 4 days of chemo of one type, then one day of rest, 4 days of chemo of another type and receive Sofia's cells on October 29th. Andy will receive new cells at 1994 days old. He will receive new cells on his 542 day in the hospital.
This is a picture of the pump used to infuse the chemo:
The original plan changed because of the positive CMV antigen. Special attention is taken to CMV and he's on Foscarnet and CMV specific gammaglobulin. He also receives other medications through his central line to prevent nausea and other side effects. He needs to be connected to the pumps 24 hours a day due to all that's he's getting. Andy has a double lumen central line that is working well. One port is red and the other is white. He takes excellent care of his central line, he's careful not to pull it. The chemo (busulfan) is using the red lumen and blood is drawn from the white lumen. Sometimes he needs to lay down on his side or raise his arms to start the flow when blood is needed. His apetite remains the same, he's drinking 1.4 liters of Neocate Pediatric EO 28. Andy had a bath today, a wet towel on his upper body and water/soap in his lower body. We use the bathroom sink. Sofia is doing well. She's not allowed to enter the Stem Cell Transplant Unit. This means that Sofia and Andy may not be able to see each other in about one month and a half. Sofia will become a stem cell donor when she's 230 days old. Dr. Nicholas Haining who's our Attending Physician came by in the morning. Andy really likes him, and that's very good news. Take into consideration that Andy has met at least 150 doctors in 1985 days. ATF
Three years ago.
Chemo (Busulfan) starts today @ 6:00 AM, three times a day for 4 days. Then one day of rest and 4 more days of chemo.
Andy is as strong as ever. He likes his new room. Before going to sleep today he cleaned his toys with alcohol wipes, clened the chairs and table, then climbed to bed and fell asleep.
Please join us in prayers and positive thoughts. Chemo will just do its intended job, won't go any further; open path for Sofia's cells and that's it, no more. CMV will stay dormant. Sofia will stay healthy. Doctors will stay smart.
Thank you
ATF
Conner's Mom:
Conner needs platelets this morning and the hospital doesn't have any to give. We are hoping that they will have some by this afternoon. If you are able, no matter where you live, no matter what your blood type, please consider contacting the Red Cross in your area to find out where you can donate blood or platelets. Please forward our plea to anyone you know!
Conner's bleeding is not slowing down, but they may try to see if they can keep him stable with transfusions every other day so that he's not using so many blood products. He has been bleeding for weeks now, pray that it stops soon!
More here.
Patience
1: bearing pains or trials calmly or without complaint
2: manifesting forbearance under provocation or strain
3: not hasty or impetuous
4: steadfast despite opposition, difficulty, or adversity
Andy's "radiator" doesnt work. We've never seen him sweat (ectodermal dysplasia),
~Norman Vincent Peale
A new category for my blog. Strange IVF News.
Here is the first one from Australia:
IVF accidentUpdated: 23:24, Friday October 12, 2007A Victorian woman has launched legal action against a Melbourne IVF clinic, after her embryos were dropped on the floor, killing most of them. The 45 year old's frozen embryos were being thawed, when a lab worker at the Monash Clinic accidentally knocked them off a bench onto the floor. The seven embryos that died could not be found as they were too small, while the surviving two embryos were recovered and implanted, but never developed. When the accident happened, all the embryos had been fertilised by the woman's partner, and had been allowed to develop for three days, before being frozen for 18 months. The woman claims she feels as though her children have been killed. She has two teenage children from a previous relationship. The woman is now considered too old for IVF treatment in Australia.
News article here.
Simon's Mom asks for prayers.
It is with a heavy heart that I write this and ask that everyone get down on your knees tonight and pray for Simon. After a grueling day of phone and e mail communications I just found out that our doctors are afraid that all of what Simon is going through could be life threatening. They are concerned that at this stage in transplant the diarrhea has surfaced and nothing is helping. They are communicating with Dr. Orange who had a similar situation and everyone is very concerned. I ask that you please pray that Simon scope shows us something we can treat and he starts to get better. That his tummy aches and diarrhea go away and he can recover and heal 100%. Losing him is not an option, its just not. I know this must seem dramatic but after my conversation an hour ago this is the concern so please pray for him truly with your heart ask specifically to heal simons gut and make him well. God Bless
More at cure4simon.org here
September 12, 2007, marked the 50th anniversary of E. Donnall (Don) Thomas's initial report of a radical new approach to cancer treatment: radiation and chemotherapy followed by the intravenous infusion of bone marrow.1 That publication represented the beginning of a long series of laboratory and clinical investigations; more than a decade would pass before the procedure achieved its first successes. Yet Thomas's persistence in the face of criticism and clinical failure ultimately paid off in a new form of therapy that was used to treat approximately 50,000 people worldwide in 2006.
Full article via NEJM here.
Larger Image:
At this house we use PLAY WITH YOUR FOOD instead of the opposite. Es every parent (extreme parent I should say) with children that have had parenteral nutrition knows it takes a lot of time for them to learn how to eat again.
This is a great tool:
Constructive Eating 3-Piece Utensil Set for Toddlers and Kids
Any mother or father who has tended a sick child has felt the powerful desire to comfort and heal. For even the most mundane of illnesses, parents miss work, go to pediatrician appointments and lose sleep. When the diseases are more serious, the efforts become more intense. To what lengths should parents go to help their children?
That's the question that drove Newsday's series "The Match" this week. Reporter Beth Whitehouse followed Steve and Stacy Trebing as they sought a cure for their daughter, Katie, who was born with a rare and fatal blood disease. They chose to use in vitro fertilization to have another baby, who became a bone marrow donor for his older sister.
Medical science is offering options to families like the Trebings that were unimaginable just a short while ago. Preimplantation genetic diagnosis allows parents to screen the numerous embryos usually created by IVF to see if they carry inherited diseases. It also enables geneticists to identify those that would provide sibling matches for life-saving bone marrow transplants. But since only matching embryos are given the chance to develop further and be born, the techniques shoulder a tremendous ethical weight: Embryos with no flaws, just a different bone marrow profile, are discarded.These embryos are not children - even under ideal circumstances, only a percentage of them would trigger pregnancies, and a somewhat smaller number would go on to become babies - but they do represent the potential for children. So, for that matter, do the hundreds of thousands of frozen embryos currently stored in U.S. fertility clinics. Destroying - or allowing to remain frozen indefinitely - otherwise healthy embryos is a practice that is abhorrent to some.
And the concept of making a new life to serve an existing one is its own ethical minefield. An estimated 200 donor children have been born worldwide. What physical effects have they suffered? As they grow up, what psychological impacts will their amazing creation stories have on them? There is currently no way to follow up and address such questions.
The reproductive technology industry remains unregulated in the United States, and cases like the Trebings' tend to bring out slippery-slope fears. If embryos can be selected to match a sibling's bone marrow, why not screen for eye color or height? In his beautifully written and deeply unsettling novel "Never Let Me Go," Kazuo Ishiguro imagines a Great Britain in which clones are created and reared so that their organs can be harvested when they reach adulthood.
We have the technology, and the threshold has been crossed. Now we must have the debate.
Article here.
A mother-of-four has got pregnant again in the hope her new child could be a bone marrow match for her sick son.
Donna Zammit's nine-year-old boy Jamie has a blood disorder called Fanconi anaemia - a rare genetic disease that can cause bone marrow failure, as well as leukaemia.
Mrs Zammit, 35, and her husband Thomas, 33, who live in Bromley, launched a world-wide search for a donor.
But they have been unable to find a bone marrow match and have been forced to take matters into their own hands.
"We are desperate - we want him well again," said Mrs Zammit.
"I did my own research online and you realise what you are up against hanging on for a donor. This spring I just thought we've got to go ahead and do it, take the chance and try for a baby."
She added: "There is a one-in-four chance our baby could be a match for Jamie and if so, she will be a perfect match."
The housewife admitted she had taken a "very big gamble" having another baby because there was a chance they could have the same illness as Jamie.
Thankfully, however, hospital tests have shown the baby is fine. After having four sons doctors have told the Zammits they are having a little girl.
Jamie, who is now a full-time pupil at Princes Plain Primary School, has check-ups every three months at Great Ormond Street Hospital in London.
He has been taking a steroid treatment for more than a year, which has meant he doesn't have to have blood transfusions.
But his mum said: "In the long-term it [the steroid] causes liver tumours. His bones will fuse together so he will only be a certain height, which is on top of the psychological problems.
"The longer they are on the steroid the poorer the outcome of the bone marrow transplant because your body is not able to respond as well as it should - we are trapped in a corner.
"We have to hope we will find a donor."
Named after the Swiss paediatrician who first described the disorder, Fanconi anaemia is so rare it affects just one in six and a half million people. There are only 10 families in the UK with a child like Jamie.
The baby is due in February.
Article here.
Christina smiles thanks to her little brother
October 02, 2007 12:00am
HER smile says it all. Nine-year-old Christina Curkowskyj wakes up and embraces every day, along the way teaching her family to do exactly the same
Christina, who has the rare and deadly genetic disease Fanconi's anaemia, was given three months to live almost five years ago after her bone marrow began failing.
Now she's a lively chatterbox in grade 3 who loves riding her new blue bicycle and is anxiously awaiting the arrival of a baby sister.
"I'm excited because I'm going to do a lot of work, to play with her -- and pick up after her toys," Christina said.
"But I can't keep her in my room."
Christina said she loves her brothers, Mykola, 7, and Thomas, 5, because they "encourage me".
In January 2003, Christina became the first Australian child with Fanconi's anaemia to survive a life-saving stem cell transplant from a perfectly matched sibling -- baby brother Thomas.
The ground-breaking transplant came more than a year after Christina's parents, Melbourne designer-baby pioneers Roman Curkowskyj and Tania Kutny, began their fight to create a genetically screened baby using IVF.
Thomas was conceived naturally while his parents were waiting for a decision that would allow doctors to screen IVF embryos to save their daughter.
He was a miraculous perfect tissue match with his sister.
The couple continued their battle and in the process helped change the rules for other Victorian families with terminally-ill children.
Mr Curkowskyj's IT job has taken the family from Melbourne to scenic Markham, on the outskirts of Toronto, Canada, where they expect to spend the next two years.
Christina has no serious illnesses, recently overcoming a tumour in her liver and facial paralysis from a brain infection last year.
She no longer has bone marrow failure, but still has Fanconi's anaemia, which leaves her susceptible to developing a range of cancers.
Christina has had more than 40 operations, including the transplant in which stem cells were taken from Thomas's cord blood and injected into Christina in the same way a blood transfusion is done.
She has also had skeletal and heart surgery.
Christina is being treated by a team of 13 specialists and goes weekly to rehabilitation clinics.
She has a teacher's aide and a nurse at school to help with her hourly tube-feeds, and at night she is fed by a machine. Despite the daily medical hurdles, Christina and her family are determined to make each day count.
"It's a good time," said Ms Kutny, 42.
"She's just overcome having the tumour in her liver.
"We got over that hurdle using Chinese medicine, because Western medicine didn't have any hope for us.
"We're out of hospital and life is good, and now we have another one on the way.
"As long as we are out of hospital we're happy.
"It's a time that you cherish.
"We go a lot to hospital for clinics and she is always afraid about: 'Am I going to stay?' "
After years of medical wards, Christina knows well the difference between being in hospital and at home.
"She lives it up," Ms Kutny said.
"She wakes up and she's like, 'It's a great day, I'm not there (in hospital), and I'm here and I'm here with my family and I've got my baby coming, (and) I've got my brothers'.
"She appreciates what she has, so she's learnt a lot too in her little life.
"From the time she was born, we appreciated that it was fragile -- life -- and we made a commitment that we would make the most of it."
Mr Curkowskyj, 44, said Christina was "the biggest gift we could ever have".
"She's taught us to live for today and to be grateful for today," he said.
