Getting Back to Normal

It is so awesome to write that Chloe is home from hospital over three months. Her blood counts are normal and have been free of Acute Myeloid Leukaemia for nearly six months now and she is finally able to enjoy her babyhood, crawling, learning to eat (again!), and finding her voice and personality. Really it’s bloody amazing to have a normal baby and home life, or something very close to it.

When we were discharged at the end of December last year Chloe was taking about eight medicines multiple times a day. She was vomiting on a regular basis and was still had mild GVHD of the skin (Graft versus Host Disease) after her bone marrow transplant so was a rashy little lady. Its taken time but slowly some of her medicines were stopped by her oncologist as her health improved.  Now she takes just three medicines; one to combat her GVHD, nausea that goes along with the  immune suppressant and a weekend antibiotic. Easy. I am in love with not having to dose my child every couple of hours with a crap load of medicines. I am more in love with the fact that she doesn’t need them anymore.

Her ability to move has increased as she realised she is not confined to a cot anymore. Her general contentedness at being at home grows each day.

At last there are no medical staff coming in the door at the drop of a hat to poke Chloe’s tummy to check her organs, to listen to her lungs and heart, no nurses to carry out observations, or to give meds, or specialists, x-rays, or scans, and no surgery on our tiny girl. No horrible chemotherapy, or viruses, bugs she caught, no need to ring any emergency bell. Unfortunately there are no cleaners (mores the pity!). It is just us. Heaven.

One happy bub

Chloe is doing so well now. She only vomits maybe once a day as we are slowly increasing her rate of nasal gastric feeds during the day to build up to what she needs so her body can get used to a normal feeding routine. Normal on n.g. feeds that is and then eventually using a bottle (that may be some time away but we will keep going). Her little tummy and gut had been used to a small drip feed continuously but now she is better we can start working towards what any other one year old has each day. Whoop!

It is so hard though to get food into her as she still has some oral aversion after her treatment and also her immuno suppressant is to put it mildly, flipping gross. So little bites here and there are welcome miracles that we celebrate! We are working with our dietitian and also beginning to see a speech and language therapist for this issue so we will get there.

Hurry up Mam and lets go!

We are settling into a nice rhythm each day with a lot of play and little rituals like Chloe helping me with laundry. She loves the laundry basket and only loves a spin in it down the hallway with all 

of the clothes! We give her a bath (a two man job as we can’t get her central line wet and there a two long lines coming out of her chest so it can get tricky) and use the hairdryer on her hair. We dress her, cuddle her and love her. She spends most of her day exploring the house she can now crawl around. We say good morning and good night to all of her favourite teddies. We for a walk each day and have a chat with our families. All of the normal things families do.

I have to say that even though I know how lucky we are there are times it gets hard. A tough part to our now normal life to not being able to be out and about around others. No going to the shop or post office, no cafe dates or play dates, no meeting friends with Chloe. I feel sorry for my wee girl as she should be able to develop relationships with other kiddies now she is getting older and we are missing out on that fact. She should be in creche (with me, I used to be an under two’s teacher in a beautiful creche) but she is still too vulnerable to be close to any sickness or we will be back in hospital again. So no thanks.

To combat the isolation we go for lots of walks and we go to clinic every two weeks. A community health nurse comes every alternate week to clinic and takes Chloe’s blood sample to check for AML and any abnormalities and illnesses. She changes the dressing on the double hickman central (iv) line that is in her chest and has a bit of a chat. My bestie will come over once a week and that's about it.

Sure sometimes I struggle with being so isolated. I was used to being busy and surrounded by others. I loved working with families and children, and with a pretty cool group of people. I loved going out for a coffee with friends, going to coffee group with other mums, socialising and sometimes it is hard to remain at home. I go to a class each week and sweat my butt off jumping around like a loon. A very odd night either myself or my hubby makes it ventures out at night for a drink but that's a rarity. I video chat with my mam and sister every couple of days. It can get a little lonely. But I know it is not forever. Eventually Chloe will be okay to be around others. Her immune system will grow and we can get her re immunised so she will be safe from illnesses. She can meet other children and grow friendships and life will get even more ordinary 😊.

It is also the fear of her cancer coming back. Leukaemia is so insidious. You cannot cut it out like a tumour. It grows in her marrow, in the very building blocks that make up her blood. What an evil thing. And even though she is doing so so well and staying so healthy I have a crushing fear the leukaemia will creep back and hurt my Chloe. This is something I and Paul will probably always live with.

Yes sometimes its hard but then I remember what it took to get Chloe to this point and I am so grateful she is still alive and with us and growing strong. I know we are lucky to still have her and I pray each day we still will have her time next year. Many people struggle with so many issues and many kids are stuck in hospital still sick or struggling with treatment or worse. Many families are not as lucky as us. My heart breaks for those who have lost their precious wee children to this horrible disease.

One lost to this is one too many.

Many people need treatment that goes on and on I remind myself of all these things and I just look at Chloe and I can see this is a minor thing to feel sorry for myself over. I have my kid and she is doing well. That is my normal and I am grateful to have it.

Yeah I guess it is not everyone’s normal and probably seems kind of daunting to some but it is our normal. And though it can be tough sometimes it really is the best time of our lives. My husband is gone back to work and started his own construction company and is busy. I get to watch my wee bub grow into a feisty happy little girl who is nearly one years old. And my Chloe is the happiest and healthiest she has ever been. Our normal is sometimes scary but it is always freaking awesome.