Mums Diary

A Mums Diary by Karen Brooks
Sept 2002 – Sept 2003

25th Sept 2002

Go to the blood donor centre again, find out that yesterdays collection was only 0.4 million & not 0.7 million. Again, Robyn sleeps for the 3 hours that we are there.

Back to the clinic at 4.30pm for another GCSF shot.

Play bingo at night, at the Ronald McDonald House, and Robyn wins the top prize of $27 - she is so pleased, and can’t wait to go to Toys R Us to spend it!

Today’s collection only 0.4 million again.

Not good new about Nadia’s on Matthew. He has Leukemia, and has relapsed 3 times now. He has been on an experimental chemo, and they found out today that all the donor cells have been killed off by this chemo (he had a bone marrow transplant earlier this year). They are going to try one more round of chemo & a boost of donor cells, but basically is this does not work, they are at the end of the road, as he cannot tolerate any more chemo.

Is there ever going to be any good news?

26th Sept 2002

Get up at 6.30am 7 take Robyn to clinic for a GCSF shot – poor thing has to have one in the morning & one in the afternoon now.

Go to the blood bank & go through the same procedure again.

Run back to the Ronald McDonald House (as it is throwing it down!!!). Britney Spears is making an appearance at the House today.

Get back in time for Britney, but it is a bit of a let down to be honest as she is only there for 10 minutes & we couldn’t take any pictures or get any autographs. Britney’s photographer takes some photos & Robyn gets one taken sitting on her knee (hope I get a copy).

Today is Garry’s birthday, but the poor thing gets no cards or pressies, as the post from the UK has not arrived.

Today’s collection 0.8 million – that’s better!

27th Sept 2002

Take Robyn to clinic at 8.00am for a GCSF shot & then it is back down to the blood donor centre for stem cell collection.

Robyn’s white counts are now 13.6 – this is the best that they have ever been, so I hope for a good collection today.

28th Sept - 1st Oct 2002

No hospital, so we 4 get to spend some time together as family.

2nd Oct 2002

Back at the clinic today, Robyn is weighed & is now 16.8kg!

Her blood is checked and is fine.

I see the doctors & they tell me that Robyn is scheduled for a CT scan on Friday, and surgery on the 17 th Oct. This comes as a bit of a shock, as I didn’t realise that Robyn would need surgery. The surgery is to remove diseased lymph nodes, and the CT scan will show exactly where these are.

The stem cell harvest on Friday got 0.9 million – 3.2 million altogether this time, the doctors are very pleased.

It is my Mum’s birthday today, and I try all night to ring her, but to no avail!

There must be something about my family, birthdays & phones!!!

3rd Oct 2002

No hospital today, so I take Robyn to Toys R Us to spend her bingo money!!!

We go with Robyn’s little friend Akaida and her family. The girls have a great time & come home armed with toys!!! This Toys R Us even ahs a huge Ferris wheel inside it, so we have a go on that too!

4th Oct 2002

Go to clinic, Robyn has to drink all her contrast (12floz) before 9.40am.

She is in a really bad mood, and it takes a lot of coaxing & arguing before she takes it.

We then go & see Dr Kushner & she is a little angel!!!!

Dr Kushner checks Robyn’s blood counts & they are so good that he talks about trying to bring the surgery date forward.

Next is down for the CT scan, this only takes about 15 minutes.

Back up to clinic where Robyn is given Pentamadine antibiotic, this protects against pneumonia.

I don’t hear any more about the surgery date before I leave for the day, so I ask them to ring me if there any changes.

At 5.00pm I see Ricky, Marie & Akaida, they are packing up to go home.

Akaida’s MIBG scan has still lit up showing that she has disease around her body even though she has just completed a dose of high round chemo. It appears that her body is chemo resistant – it is so sad, and we feel so sorry for them.

Even though they haven’t given up hope, the picture is pretty bleak at the moment.

5th Oct – 12 th Oct

No hospital, we are able to spend some quality time together as a family which we all need.

Do receive a phone call on the 9 th to tell us that surgery has been brought forward to Tuesday 15 th Oct with a pre-surgery consultation on the 14th.

13th Oct 2002

2.00pm go to a party at the hospital organized for Neuroblastoma patients & survivors.

It is very emotional, and all the doctors get standing ovations for the work that they do for the children.

Robyn & Elise have a great time, and come back armed with a giant cuddly tiger & other goodies.

14th Oct 2002

Arrive at the clinic at 12.15pm. Robyn’s blood is taken & she is weighed – now 17.2kg.We have a meeting with an assistant to the surgeon who explains tomorrow’s procedure.Next we meet with an anaesthesiologist who also goes through tomorrow’s procedure & also recommends that Robyn has an epidural for pain relief.Then we meet Dr Laquaglia, he shows us Robyn’s CT scan & where the lymph nodes are that he will be removing. The lymph nodes are situated between the main artery & main vein of the body and are actually pushing the two apart. He explains to us that this is life threatening surgery due to the delicacy of the surgery

We are told to arrive at the hospital for 6.30am to get ready for surgery.

We get back to the Ronald McDonald & then receive a call to tell us that surgery has been put back & not to arrive until 12.30pm. This now means that Robyn cannot eat anything after midnight; we will have to keep her up late so that she can sleep as late as possible in the morning.

15th Oct 2002

Big day!! Robyn sleeps in until 11.00am which is just what we want. As we are getting ready to leave the Ronald McDonald House at 12.15pm, we get a phone call from the hospital asking us where we are, as we should have been in at 6.30am!

Go straight to the hospital and they put Robyn on IV fluids ready for surgery.

At 1.30pm they take her down & we all go with her. Eventually around 2.15pm they give Robyn a sedative , at first it makes her really giddy & giggly, but just as they are about to take her down to theatre, you can tell that she is frightened & she keeps on shouting Daddy, Daddy!!! Garry is obviously really upset.

All 3 of us are crying as we have to leave her.

We go & get a coffee & sit in the waiting area. One of the liaison officers comes to see us, & explains that the pre-surgery preparation takes about an hour and a half, so we may as well get out for a while.

We hang about for hours, at 6.00pm the liaison officer comes to see us, & tells us that Dr Laquaglia has finished removing the lymph nodes, & is now sewing Robyn back up.

This is a big relief to me as I feel the worst is now over with.

At 7.30pm Dr Laquaglia comes to see us & tells us that it all went well. He had removed all the lymph nodes; he had also taken a biopsy of the liver but said that he thought that all the organs looked fine.

At 8.30pm we are allowed in to see Robyn, she looks all swollen & puffy which really upsets me (even though I had been warned that this would happen)

At 9.45pm the Ambulance & Doctor arrive to collect Robyn & transfer her to the ICU unit (which is in the hospital across the road). Garry goes across with Robyn in the ambulance, & Elise & I walk over.

Robyn is settled down around 11.00pm. At 2.00am she is trying to rip her tubes out!!!

16th Oct 2002

Wake up at 7.00am, as Robyn is trying to take the breathing tube out of her mouth.

She tries to talk to me, but can’t because of the tube & then she gets really mad because I can’t tell what she is saying, this is so upsetting.

The doctors come in & tell me that they are really pleased with hoe Robyn is doing. They take her of the ventilator & then I can tell what she is saying, it is lovely to hear her voice!

Robyn is put on an oxygen mask, but doesn’t do as well as the doctor’s hope & she is put on another type that forces her to breathe deeper.

17th Oct 2002

I find it really hard to sleep; I eventually fall asleep around 6.00am & then wake up at 10.00am.

Robyn seems to be doing a little better today, & is beginning to boss people around – which is a good sign.

Garry comes over & stays with Robyn whilst I take Elise out for a few hours.

When I get back to the hospital, Robyn has had a bit of a set back & is not doing as well as she should be.

18th Oct 2002

The doctors come round & tell me that there has been further fluid build up around Robyn’s left lung & that they will need to insert a drainage tube to get rid of it.

Robyn is beginning to make less sense in her talking & complains of everything hurting, especially her back. This I am told is due to the fluid build- up near her lung.

They ask me to leave the room whilst they carry out the procedure; this takes 1 long agonizing hour. When we see the doctors, they tell us that all went well & that they were able to drain off 100ml of fluid from her chest. They tell us that we should now see a big improvement.

Immediately Robyn appears more alert & her stats are better. We hope to get her off the breathing mask tomorrow

Robyn is now allowed to drink & seems a lot more settled.

19th Oct 2002

Terrible nights sleep, Robyn is awake every hour.

When she wakes up properly, she is back to being “Robyn” again, which we are all glad to see- Asking for ice-cream, happy meal & watching TV!!!

20th Oct 2002

I spent last night at the Ronald McDonald, whilst Garry stayed with Robyn at the hospital – I get good nights sleep, & manage to catch up on some much needed washing!

Get to the hospital at lunch time. Robyn looks brilliant; she is sitting up playing & talking and has got the Robyn twinkle back!

The doctors come in & take both of her chest tubes out.

We get her out of bed in the afternoon, which she doesn’t want to do, but she walks really well.

At around 8.30pm, the doctors come in & tell me that the latest x-ray shows a slightly collapsed lung. The doctors reassure me that it is nothing to worry about, but that Robyn will need to be on oxygen over night.

Robyn has me going out to get her toast & cream cheese at 1.30am – good job that we are in a city that is open 24 hours!!!

21st Oct 2002

The morning x-ray shows that the lung now looks a lot better, so much so that we can be transferred over to Sloane Kettering today.

We sit around for most of the day waiting to be transferred. Around 5.00pm we move over the road to Sloane Kettering where we get to share a room with our old room mates Matthew & Nadia.

Drew has been in surgery today to see whether his bowel could be saved & to reconnect his intestines. I see Tammy & Phil later that evening & unfortunately, Drew’s bowel could not be saved & the only option open to him is a liver & bowel transplant.

Tammy & Phil now have the awful decision to make of whether they want to put Drew through this – surely this isn’t what parenthood should be about!

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