A while back, Miya's story ran in a local newspaper where Chris is from. A fundraising event was taking place, organised by Chris's family, to raise money to take Miya on a holiday and the newspaper ran a story on it; we were thinking enough might be raised to take Miya on a UK holiday.
We were contacted out of the blue by a man who wanted to run in the Manchester Run and the Great North Run for Miya's benefit. After the runs were completed, he contacted us to say he had a cheque ready to send to us. The money raised was more than we could have dreamed or hoped for. We took a family vacation to Menorca.
For a whole week, we didn't have to think about hospital appointments or illness. We didn't have the stresses of everyday life, and the stresses that built up over the almost two years since Miya's diagnosis. The holiday was great for our family and great for my marriage. We never, ever would have gotten away anywhere any time soon had it not been for the kindness of strangers. Somehow, "Thank You" doesn't seem like enough to say.
Here are some photos of our holiday. I know my dad has been itching to see them!!
With mummy, hot and humid outside
With daddy on the balcony
Watching the "Big Red Bucket"
The children's pool, and view from our balcony
The "Big Red Bucket", Miya's absolute favourite
At Gatwick Airport, waiting for our flight
On the plane, ready for takeoff!
Swimming with Daddy
In the pool
A small beach near our hotel. Suitable for playing in the sand but too much seaweed for swimming
We're on holiday!!!
Playing with Daddy
Building sandcastles with Daddy...first time playing in the sand!
Loving the beach!
Having a drink from a big girl cup
At the airport in Menorca..Super cool in sunglasses
Miya's second birthday was celebrated on the 7th of July. Just as last year, it was a party for three (Mummy, Daddy, Miya) and Miya enjoyed herself imensely. Once I persueded her to stop playing with the balloons, she enjoyed opening her gifts and eating a slice of birthday cake.
Miya's Giant Cupcake Birthday Cake
Miya Examining The Gifts
Now THAT'S How You Eat Cake!!!
Miya's 9 month post-BMT appointment took place last Wednesday at Great Ormond Street Hospital and it was uneventful. Despite it being two days before the Opening Ceremonies for the Olypics, the driving was good (for London) and we got in and out more quickly than usual.
The usual blood tests were taken and the usual glowing reports were given. Miya's blood counts are really good and we are waiting on the routine engraftment test results (the actual blood test will be done on the 10th of August, locally by our community team). However, I am confident they will return the desired result. Miya's last engraftment test was done in April and was 99%.
Last night, Miya spent her first night in her "Big Girl Bed" because she is now a "Big Girl". She will not hesitate to tell you this. (Incidently, she will also tell you it is "Very Important To Brush Your Teeth!!!". I went in to check on her about an hour after I put her to bed, and she was laying in bed, looking at a book my dad sent her. She still wears corrective boots with a bar between them at night (for the correction of club foot), so getting out of bed will require some determination on her part. I expect, if she ever tries it, I'll hear a "Thud!" followed by crying.
Looking Proud For Having Her Feet Buried In The Sand
Excited To Be In Her Pool
Miya's New Sandbox
Miya Trying Out Her New Bed (With Bed Rails For Safety!)
The weather this summer, in our part of England, has been rainy for the most part. We seem to get a week of sunshine followed by about 6-8 weeks of rain. This past week has been lovely and warm and we've all been outside as much as possible. Miya has been in her paddling pool and got a new sandbox as well as a Hello Kitty bucket and spade set. We've also been to several parks and soft play areas. Miya adapts to new situations quite easily and her vocabulary is growing every day. She can put together simple sentences (five-six words in length) and chatters away for most of the day. She asks me for chocolate milk on a daily basis and only seems to want to eat sausages (a typical two-year old).
Below are some photos of our outings and our everyday life.
Last week, we travelled to Great Ormond Street for Miya's 6 month post-BMT ECHO and opthamology review. Barf.
The ECHO took place in a brand new part of the hospital and was cool and air conditioned. The opthamology review took place in the old hospital and WAS NOT cool and air conditioned. It was so hot and claustrophobic, it was the closest my imagination could come to conjuring images of hell. Migraine!!
**Note: Miya's ECHO was normal and (insert trumpet fanfare) her corneas are only lightly clouded. Her iris colour can be seen through the light, and her eyes are hazel!!
On a different, non hospital related note, I must mention that Miya has become somwhat of a celebrity in the town where Chris is from. Because the trips to London have taken their toll on this family financially (even though we have received some financial assistance from Army charities) we have not been able to take Miya on a proper holiday. Small trips are even a struggle sometimes. Chris's step-mum decided that she would like to organise a local fund raiser to help us take Miya on a short break here in the UK (Centre Parcs or similar). The support has been mind boggling. We were contacted by the local newspaper who ran a story on as (not entirely accurate, though, might I add). We were also contacted by a husband and wife who do charity runs and were interested in running for Miya's benefit. Whatever money is raised, we are going to go on a holiday and if any is left over, we're going to put it aside for any medical equipment Miya might need that is not covered by the NHS (such as an uber-cool pink and black wheelchair, if and when the time comes).
The onslaught of warm weather means that our back garden has suddenly become home to a paddling pool. Despite the hosepipe ban, we have been permitted by our water company to fill the pool with buckets. About 40 of them. And it's not even full. Miya has had a blast in it but putting sun cream on her remaining hairy body parts is a NIGHTMARE!!
She's got a hairy back!!
Miya has started speaking in short sentences which usually revolve around cats, shoes, and doors. She has also started saying "Daddy" as opposed to "Dada". She has starting whining and having small tantrums (typical of a nearly two year old). She makes me laugh and she makes me shout and sometimes, I feel like I might have a nervous breakdown.
She did this to herself
At the cafeteria at Great Ormond Street Hospital
I was recently contacted by another mum of a Hurler's baby. She reads this blog!!! I was amazed that someone other than my father reads this blog!!! We're meeting up on Tuesday!! I love meeting other MPS families because they know what I'm talking about when I mention "enzymes" and "GAGs". They don't think I'm long-winded when I talk about MPS and they understand Miya's unique appearance. (Although a frined of mine told me the other day that Miya's unique look makes her very pretty. Awww shucks!!)
I'm unimaginably tired. Miya is busy, therefore I am busy. There aren't enough hours in the day and by the time Miya goes to bed, I just want to sit and stare out the window and vegetate.
As a family, we are looking forward to the summer time and I am planning on taking Miya to Peppa Pig World for her birthday (Chirs has been notified of this plan. I'm assuming he's coming along too).
Last Friday, we went to London for Miya's six month post BMT clinic appointment.
Let me begin by saying, a week before the appointment, the BMT office called me and said that when Miya was in having her Hickman line removed, Norovirus (the virus that can cause vomiting and diarrhea) was present in her stool and she couldn't come out of isolation until she had three consecutive negative stool samples. Great. Why wasn't this caught before now?? What took them a month to notify me? Anyway, we were in a special isolation room at the hospital because Norovirus is extremely contagious and even though she tested positive for this virus a month prior, there was no proof she wasn't carrying it anymore and precautions were taken.
Miya was evaluated by Occupational Therapy and was found to be doing age-appropriate things. No further follow-up is required and she will not be referred to a local Occupational Therapist.
An ECHO was scheduled, but because of the Norovirus, Miya was not able to attend and this will be rescheduled.
The BMT doctor who saw Miya was very pleased with her post-BMT convalescence and went as far as to say that she was the best post-BMT Hurler patient she had ever treated (she is not the only doctor to say this). We were also advised by the occupational therapist that in her two years of working at the hospital, Miya was the only patient she had worked with who spent less than 40-60 days in hospital for a bone marrow transplant.
Two of Miya's medications were stopped, and another one may be stopped, depending on the results of her immunity blood work that was taken on Friday. Also, her NG tube can come out providing we can coax her to drink 700-800ml of fluid a day and we can get her to take her remaining medications orally. Taking the medications orally hasn't been a problem, and between water, milk, and juice, the fluid requirements have proven to be successful over the last two days.
Now, I'm not bragging (well, maybe a little) and I don't want to press my luck and a whole bunch of bad things happen (but I'm as prepared for that as I can be) but I think all of this is promising. Chris and I always knew Miya was a star!!
I'm sorry. I'm sorry for neglecting you. I keep meaning to update the blog. I really do. But then life happens (as it does), and this poor blog gets pushed to the back burner.
So here I am, better late than never, updating you fine people on Miya.
Miya is FANTASTIC!! She is SO AWESOME!! And I'm not just saying that becasuse she's my kid, ya know. I really mean it.
Last Thursday, Miya underwent a small surgery to remove her Hickman line!! This is a huge step in the post-BMT world. It says "Hey!! I don't need loads of blood taken anymore!! I don't need IV drugs anymore, or blood products!!" This removal means so much to Miya and to our family. This means normal baths! It means swimming when she is released from semi-isolation. It means no more weekly dressing changes (Miya HATED them) and no more tucking lumens into clothing and making sure they were hidden well in pajamas, so little hands couldn't reach them in the middle of the night.
Watching Pingu on her iPad after coming back from surgery to remove her Hickman line
Although the hair produced from taking Ciclosporin is slowly coming out, Miya still has a lot of hair on her back, bum, shoulders, arms, and the tops of her legs. The hair on her face and lower legs is slowly starting to thin/fall out.
Miya is becoming more and more independent. She doesn't want to crawl up the stairs anymore. She wants us to hold her hands while she walks up. She chooses her footwear and which jacket she wants to wear. She also speaks!! Off the top of my head, here is a list of Miya's vocabulary:
No, Yes, Yay!, Mum, Dad, Cat, Blue Car, Car (I'd like to point out that "car" is often used independently of "blue" but "blue" is never said on its own), Uh-oh, up, down, corn, I don't know, where?, airplane, nose, ding-dong, cow, shoes, two (she thinks every number after one is "two"), shhhhh (while putting a finger to her lips to indicate quiet), and Comebo (it's how she says "Columbo". So what? I like to watch Columbo!!). That's all I can think of for now, but I know as soon as I post this, I'll think of more.
She can do the actions to "Head & Shoulders, Knees & Toes" and the actions to various other songs I've taught her. She also likes to dance and play music.
We have a clinic appointment at GOSH in two weeks. At that appointment, a CD4 marker blood test will be done to determine Miya's T-Cell production. The magic number is 300. If Miya's T-Cell count is 300 or above, she can come out of isolation. It generally takes 2-3 days for the results of this test to come in.
The following is a video I made of Miya while driving in our blue car.
Yesterday was our monthly trip to Great Ormond Street Hospital in London for Miya’s clinic appointment.
Miya was hardly recognisable to some of the staff, who were astonished at how much she had grown since January, and how good she looked. The usual blood tests were run, along with an engraftment test and a CD4 Marker test (to gauge the production of T-Cells, a part of the immune system). Her bloods came back today (apart from the engraftment and CD4 Marker tests) and they were very good. She is doing so well, that the doctors don’t need to see her until April, at her 6 month post-transplant checks.
Miya has started saying some new words: up, bye, yay! (while clapping her hands) and she can climb stairs REALLY quickly. She tries to climb them one foot at a time, and holds on to our hands or the wall to accomplish this. She understands almost everything we say to her, and is very good at putting things back in their correct location (for example, she’ll put her chalk and crayons in the correct trays on her easel, and she’ll put her books and dolls back on her toy shelf). Her appetite has increased and she no longer requires feeds through her NG tube. We have learned to place the NG tube ourselves and the community nurse only comes to take Miya’s blood pressure, take bloods and do Hickman line maintenance.
At April’s appointment, our termination of semi-isolation will be determined as will the removal of the Hickman line.
