The Abdullah family received news this week that no parents should have to hear that their sweet girl, Paige was diagnosed with leukemia at 22 months. Let's help financially so they can focus on getting Paige healthy.
Paige had a chemo treatment today, she is doing well and staying healthy for the most part. We got great news today, her end of treatment has an official date, 11/14/2021!
Let's help the Abdullah family with financial support during this time where Nick and Shauna are not able to work full time and to cover all of Paige's medical expenses.
Some good news to share! Paige had a lumbar puncture 1/27/2021 to start her 3rd round of maintenance therapy. She did well, but she really hates when it's time for anesthesia, both her and Mom cried this time. They did however find out that she only has ONE more lumbar puncture to do (in April) AND her treatment actually ends a month earlier than originally thought (Nov 14 rather than Dec 19)!!!! Apparently, the protocol changed for the clinical trial she is in (the two 28 day backpack chemo med infusion). She will then get her port out in December. As if all this wasn't enough great news, her blood counts were down to the range they want them to be (previously have been high 2 months in a row), so her the chemo do at home will not be increasing at this time! The 5 days of steroids was not pleasant for anyone! They did switch her at-home Chemo from a pill that they had to crush daily to a significantly more expensive liquid. Crushing the pill left residue on the crusher, the cup and the syringe and seemed like she may not be getting the “full dose”. The liquid seems to be doing the trick with her lab numbers being in the desired range which is what’s most important.
Even with all of her treatments, she is still in great spirits and loves to play and sing “Sing a Rainbow”. She knows all her ABC’s, can count to 30 and can “read” The Lady With the Alligator Purse. Can’t get enough of watching Mickey Mouse’s Club house and doing Daisy’s Dance - she even taught Max how to do the dance.
She was given a new loft bed with a slide by the Little Wish Foundation, which she just loves.
The family will be taking it’s first major trip since she was diagnosed to a lake in Alabama for a week during Max’s spring break after basically having been in “quarantine” 7 months longer than the rest of the country.
Yesterday (9/9) is one year mark when Paige was diagnosed with leukemia.
Paige is at the start of the final (long) phase of treatment called Maintenance, and had another lumbar puncture. Maintenance is 84 day cycles until 12/21/2021. Each cycle starts with a chemo lumbar puncture, IV chemo and 5 days of steroids. She also has chemo pills (which have to be crushed since she can't swallow a pill yet) at home every single day. She is tolerating this phase ok so far.
Paige is doing some "real" things now. She is changing so much, speaking in sentences, learning to write her name, working on muscle coordination, dressing herself, and spending a little outdoor time with her neighbor "friends", who unfortunately will be moving this week. Her hair has started growing back already, even though she is still getting chemo. They are spending time outdoors, gardening, and riding bikes. Paige had her first trip to the dentist and she is so used to examinations, she hopped right up into the chair, and opened her mouth, and she was told her teeth are "sparkly". She is working on potty training and is starting to have success.
Max has gone back to school, currently in person, so coordinating all of that with Covid-19 and an immunocompromised child, WOW. Nick and Shauna have really met the challenges, for sure.
Remember, this is not a race, but a more of a marathon, as Paige continues treatment for another 18 months.
As always, we are so grateful for all of your messages and love and support.
This update only allows one picture but will add more to the Fundly page.
Sorry it’s been a little while since an update has been posted here. Paige is doing well, her counts are staying up and she has been a real trooper. Somehow she has managed to not get sick during this flu season. She has had a 2-week break without treatments between phases. Monday morning starts her next round. She is going to the clinic for a lumbar puncture and will start her next phase of the clinical trial. It requires she stay in the hospital ICU for a minimum of 2 days to make sure there is no reaction to the medication. This phase is where she is connected to a pump for 28 days, so she wears all her equipment in a backpack. She has a pump, similar to insulin pump, with a 4 day IV bag of the study drug (Blinatumomab). It stays connected to her port 24/7. Last time she did great but managed to disconnect her tube twice!
Her old school does a fundraiser each year for the Leukemia & Lymphoma Society (https://www.penniesforpatients.org/) called Pennies for Patients, well this year they renamed the event to Pennies for Paige! Her counts were high enough, so she was able to visit her old classmates and watch them throw pies at their teachers. She had fun being a ‘normal’ kid again. Their goal was to raise $500 for the organization. It looked like they were getting close.
Thanks for everyone’s support, it means a lot to the family! Prayers are needed for Monday!
Today Paige got randomized into the clinical trial. This will add 2 extra 5 week phases to her treatment. On Thursday she will get another lumbar puncture and be admitted into the hospital until at least Monday. The experimental drug that she is getting is called blinatumomab, which helps her T-cells target the leukemia cells. Once discharged she will wear a pump that will pump the drug into her system 24/7 for 28 days. This drug is the standard drug that is used for patients that have relapsed and has shown very positive results.
She is still in great spirits, playing and active like a healthy 2 year old. She is jabbering non-stop and really loves reading books out loud.
Thanks your for all your thoughts and prayers! Keep them coming!
Paige turned 2 today, she had a great weekend with lots of visitors!
Last week the results were in for Paige’s bone marrow test and unfortunately it was bad news. 3 out of the 4 tests show positive for leukemia still. The next step is parents must decide if we’re going to stay in the study and be randomized. This will determine if she gets a new experimental treatment or standard treatment. Let you know next week how it goes. Thanks for the support!
Paige had another Lumbar Puncture Thursday. Spinal fluid withdrawn and Chemo injected. She did fine, but was upset waking from anesthesia. This was her first time having her port accessed since they put it in last week and she did great! She doesn't want anyone to touch it but she didn't cry at all! Brave girl!
Her ANC was up to 1316 from 987 last week! (Normal is 1500-8000) She hasn't been eating or drinking much and that is expected but is just a HUGE shift from how she was when she was on steroids. Her other labs and electrolytes were normal so they aren't concerned. They did however give her some fluids since they had to access her port anyways for labs and anesthesia.
She has been a happy girl playing and riding her bike in the house. She has been busy baking, washing dishes and doing crafts with Grandma Cathy. She is sleeping through the night most nights as well.
We found out the test to determine our next phase of treatment based on the clinical trial was officially sent off on Monday 10/21 so we are looking at about 11/4 at the earliest on those results.
On Tuesday Paige went into the clinic to find out what her bone marrow results mean as far as treatment goes. The test results she got are accurate up to .01% and showed NO leukemia cells. She has been enrolled into a clinical trial and her first and most recent bone marrow samples will be sent off to get results to .001% level. This will determine which branch of the study she will take. Those results will come in about 2-3 weeks. She has currently moved out of the induction phase of treatment into consolidation phase which will last 4 weeks and started 10/17. During this phase, she will get chemo via pill once per day and lumbar puncture chemo once per week on Thursday's. Anyone interested in reading more about treatments - https://www.cancer.org/cancer/leukemia-in-children/treating/children-with-all.html
Today Paige had her first real surgery where they placed her port in her chest. This will allow for direct access to her vein. During this procedure they also removed her PICC line and gave her chemo. It was a big day, she is doing well but tired. Thanks for everyone's support! #playforpaige
It's been a long 28 days since diagnoses. Most of the family got no sleep these days but happy to report since stopping the steroids Paige has slept all night 2 nights in a row! She is very bubbly and happy. Since she is able to walk now she just walks around the house and giggles because she is so happy to be able to do it again on her own.
This afternoon the doctor called with the results of her bone marrow test from last Thursday, NO LEUKEMIA CELLS LEFT! Paige still has a long road ahead but this is great news. Tomorrow she will get her treatment plan going forward. Thank you for all your support, prayers and donations, it's working!
Results from the ultrasound of Paige's organs are mostly good news today. He organs are still larger than they should be but have significantly reduced in size since since her diagnosis day on 9/9. She has 2 more days of steroids which hopefully will make things easier on her. She is currently having trouble getting around and sleeping. Thanks for all the support! #playforpaige
Paige had a rough chemo day on Thursday but is hanging in there. Her stomach has gotten so large that the doctors wanted to do an ultrasound to check her organs. The results showed nothing to be alarmed about. The doctors think it's just the steroids making her bloated. Suggested that we remove as much salt from her diet as we can. This is proving difficult since all she eats is cottage cheese, string cheese, and mac and cheese. The hope is steroids stop this week and everyone can get some sleep! Thanks for everyone's support, please keep sharing!
Paige was a chemo trooper today! She had her latest round of chemo and was a brave girl getting her PICC line dressing changed. The steroids make her never stop eating and not much sleep at night but she's still a pretty happy girl.
Thank you for all the support - worldwide (US, Canada, Australia)! Paige is responding very well to the treatment she had received so far. Her numbers are improving and she is such a good little brave girl at her appointments. She wears her mask, happily cooperates for vitals - even blood pressure which she calls a "wheeze". One drug is making her eat like crazy. She eats small amounts, constantly, even waking for a 3am string cheese. It's been an intense few weeks, but they are slowly getting into a routine of sorts. Nick volunteered for the job of flushing her PICC line daily. Shauna will be able to work a handful of hours in the coming weeks.
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