Day 45 (April 29th)
White Blood Cell: 6
ANC: 4.5
Platelets: 108
That 108 almost made up for the otherwise extremely stressful day. We left the hospital today. It was incredibly difficult to say goodbye to a place that has cared for your baby so intensively, everyone from the head of the department to nurses who never even had her as a patient. For the first time in 8 weeks, Haley is not tethered to anything. For the first time in 8 weeks, she has not just fallen asleep only to be woken up by the nurse’s assistant to take her vital signs. For the first time in 8 weeks, there is no night nurse to watch over her. For the first time in 8 weeks, there is no call button. For the first time in 8 weeks, there is no alarm to mute from one of her machines. For the first time in 8 weeks, there is no chair to pull out. For the first time in 8 weeks, I am not sleeping with gloves, gown, and mask. For the first time in 8 weeks, Haley took a breath of fresh air.
Also for the first time in 8 weeks, Anna and Haley saw each other. It was quite a fun reaction, the two of them had together, and they got along great. That is, until I picked up Haley. Then Anna went ballistic. Hopefully, that will blow over, and Anna can come and go and feel welcome and not feel like someone’s taking her mother (or father) away. I hope this makes her feel more secure.
The name of the game now in this new apartment is what I call the real survivor. This is Haley’s Island. And the object is to keep her on the her own island the entire time. We go back twice a week to the hospital as outpatients, starting tomorrow morning at 8 a.m. But other than that, and few nice trips through central park (which is across the street!), she will be here contained on her island.
In the meantime, I’m still cleaning like crazy. It’s hard to go from gloves, gown, mask 24/7 to none at all. It’s hard to know how much cleaning needs to be done when you don’t have that first line of blue/yellow defense up anymore. I also am going to have to make sure people relize that she’s still sick, so no kissing on the face, getting too close. That’s going to be the hardest part.
Another thing I am told is that once the white blood cell count reaches a certain point, the number itself won’t indicate how her immune system is rebuilding. For that, there are a whole bunch of other numbers, and of course, I will be following those religiously. So this blog will be up for at least Day 100. That also marks the first milestone in her new immune system. Her post transplant treatment will be as an outpatient, so for those who thought the blog ended when she was discharged, please stay tuned and see what happens. And although Dance and Music Therapy will probably be discontinued, OT and PT will be coming to the clinic to work with her.
Guest today was Grammy. She stayed until we moved into our new situation, and then had to leave.
Funny moment of the day were the girls’ expressions when they saw each other for the first time. Well, it wasn’t funny so much as it was a fun moment.
What an overwhelming day this has been for all of you. So happy to see those numbers rising. Hopefully, now that you are settled on “Haley’s Island” you all will be able to get a good night’s sleep for a change. How often will you have to go back to the hospital for check-ups, treatments and/or therapy? With G-d’s help, we’re hoping you will not have to return to the hospital for any other reasons.
Anna’s reaction to your picking up Haley, as sad as it may seem, is not really unusual. Some children have a really difficult time seeing younger siblings get attention, even when they live in the same house and are together every day. When there is an illness involved, it is not surprising that the green-eyed monster comes calling. Anna is bright, articulate and aware of her own feelings. The situation will certainly improve as life normalizes, Haley heals and Anna matures.
So glad to hear you are continuing this blog. It means so much to us to be able to follow Haley’s progress. It helps us feel part of your family. It enables us to feel less helpless. It allows us to communicate our prayers and good wishes and send you our love and lots of hugs.
April 30th, 2007 | #
So much to adjust to, but, oh that fresh air! And those great counts!!!
This is a totally goofy thought…I have a new song for us all to sing on this forum. It’s sung to the tune of One Hundred Bottles of Beer on the Wall. Are you ready? A-one-and-a-two-and-a-three…all together now:
100 days of this blog on the net/100 days of this blog.
Don’t get down/just pass it around,
100 days of this blog on the net!
Hope my silliness brought a smile to your lips. xxoo
April 30th, 2007 | #
Thank you for deciding to keep us in the loop of your lives. I’ve grown quite addicted. I look forward to the day when I might actually get to meet you guys. From where I sit it sounds like Haley and Anna did GREAT together–even including Anna’s ballisitic moment. You are surely right about the distress and insecurities improving as Anna comes to hang out with you two. I’m sure that Haley will quickly remember the adoration that she has for her big sister. As Yossie said to me, “That Anna’s got spirit! I like her!” Me, too. And Haley has had her body put through the wringer and faces it like the winner that she is. Clearly you and Ranaan have been doing an outrageous job as parents together. May this be the most challenging, difficult year that you ever have.
Enjoy breathing and kissing the warmth of your daughters’ cheeks.
Linda and Yossie
April 30th, 2007 | #
The news is good, Tansy and Ranaan, we are so pleased! This is truly a cause for thanksgiving. 108 unsupported platelets, בלי עין הרע!
I don’t know how you managed with those masks 24/7, they are so smothering. But when your child is involved, everything becomes possible, you find wellsprings of strength and superhuman abilities.
May you all go מחיל לחיל!
April 30th, 2007 | #
yippee! you’re out.
excellent news.
i look forward to reading the next installment.
kisses to all. lauren
April 30th, 2007 | #
Funny thought for YOUR day – Had a dream that you moved to your apt and I came to see you but you were so remote that I had to travel thru a swamp to see you and I kept passing all the earth science things that Mrs Scales taught us and I kept saying things like, “oh, thats a watershed”……..wait – maybe it was a nightmare, not a dream……
April 30th, 2007 | #
I said before, and I’ll say again, it’s such a blessing that you have this island to go to, and aren’t trying to do the next phase in a full house. I hope the island gives you a greater sense of normalcy and peace once you get used to be unmonitored and ungowned.
And look at those counts! Haley is a superstar! I was thinking back over the last few posts, and really admiring how her little body is able to assert itself so she gets what she needs. Her body said, “Too many meds, it’s not working for me.” So now you’re down to 4 from 7 meds. That’s great–and she’s clearly thriving.
As is Anna, with her 100% age-appropriate behavior. The last thing you want in a toddler is resignation or quiet acceptance of disappointment. It’s hard to hold on to that thought when the meltdown is in full swing, but if you can, remember that she is doing exactly what she needs to do at this age.
April 30th, 2007 | #
The platelet report is utterly fabulous. Wow!! I love this.
I hope you are adjusting to your life “on the outside.”
It must be so nice not to have to turn off the beeps, but so scary to not have the constant supervision.
I loved hearing about Anna’s and Haley’s reunion. Awwww… I bet they will enjoy each other so much. Agreed, Anna’s reaction is so normal. She’ll settle into things. It may take a while- and keep in mind that this happens at my house too. Don’t be too hard on yourself!!
I too am so glad that you’re going to continue your blog. Thank you! love, Dana
April 30th, 2007 | #
The best thing is finally being able to have Anna and Haley together at times and for them to be able to see each other’s face without a mask.
Keep the messages coming and love to all.
Sheila & Sherman
April 30th, 2007 | #
Despite my best efforts, I was unable to procure EITHER Mr. Roarke or Tattoo for your arrival on Haley’s Island. Ricardo Montalban is booked doing Khan reprises at Star Trek conventions and Hervé Villechaize has apparently been gone for 15 years. Too soon, Tattoo, too soon. My fallback was the Skipper Jonas Grumby and that lovable goof Gilligan, that didn’t quite work out either. Just cause they’re on TV Land apparently doesn’t mean they’re available for appearances.
Anyway, Haley, you’ll just need to accept OUR virtual greetings to your chic Manhattan pied-à-terre. Try to keep the carousing to a minimum while you’re convalescing. Those bright lights of the big city will still be beckoning to you when you’re out of Huggies.
Enjoy your newfound horizons. Startle a swan for me in Central Park.
April 30th, 2007 | #
So happy to see the numbers rising on their own! Thanks to Anne for providing me with the funny moment of the day as well – wow – Mrs Scales – a name that I have not thought about it a million years. Hope to see you at the end of the week!
Lots of Love,
Yael , Ephi and the kids
April 30th, 2007 | #
So glad you are out and in the sunshine! The 85th st park is an intimate and fun place allowing u the necessary privacy for Haley and the freedom to roam, for Anna. I am sure that the fresh air will contribute to Haley’s recovery…..Looking forward to seeing you there.
Hugs, Lona
April 30th, 2007 | #
We are so glad to hear of the progress. I too remember the name Mrs. Scales from way back when.
Looking forward to hearing more about the sisters, Miriam & Steve
April 30th, 2007 | #
Love that platelet rebound — woo-hoo, into the 100s!! I’m sorry today was so stressful, but I hope that you will develop a new rhythym in your own apartment that will feel more like real life and compensate for the security of the hospital. I’m impressed that the meds are going down more easily (at least some are) and she’s more willing to take them. I’m thinking a little yogurt mixed with banana baby food might appeal (bananas aren’t proscribed, are they?).
We’re staying tuned for the 100 days — hoping each one brings more good news.
xoxo,
norm, lindsay and tamar
May 1st, 2007 | #
WE are looking to find someone else to clean for you – call me. This is wonderful news – home will at least allow you to avoid the other parents in the kitchen and the alarms going off in the middle of the night, you can take her temperature when you want etc…hope those counts keep climbing.
May 1st, 2007 | #