Bone Marrow Biopsy Results

Alhamdulilah, by the grace of God, we got a call today from the medical office telling us that the results of her bone marrow biopsy came back negative.

While this obviously doesn't mean she is cured it is still a good sign.  It lets the doctors know that her body has been responding to the treatment so far.  Its the first milestone to make sure Zaynab is progressing in the right direction.

This means that Zaynab will start the next phase of her treatment called Consolidation.  It is a two month phase that has several new medicines.  I pray that God gives her the benefits of the treatment and protects her from the side effects.  Ameen.

Thank you all for your continued support and prayers.  Insha Allah we will try and post more as we find out more info from the doctors.

Alhamdillah: Biopsy went well

 Zaynab's bone marrow biopsy was done this morning at 9:30. Thankfully, there were no complications with the procedure which took about 30 minutes. Afterwards, Zaynab had a dose of antibiotic through IV & some fluids to keep her well hydrated. An oral antibiotic had been recently prescribed for a minor urine infection  and the nausea was giving her a hard time to keep the oral medication on track.
  Zaynab is happy she won't be taking the Prednisone tablets for the next couple of weeks.However, she will be taking medications for the side effects of the previous block of treatment.The results of the biopsy are expected  next week, since some of the tests will be sent out of the hospital and then double checked. The results will determine the coarse of treatment for the next phase.

  Thank you all for the continuous love and support, and keep us in your prayers.

Day 26 - Bone marrow biopsy in two days

Today was an interesting day.  After several days of Zaynab complaining of fatigue and weakness we went for a dr. appt to check her blood work.  The blood work actually came back not too bad.  Her red blood cells were low, but they were actually up week over week.  The doctor however felt it was better to give her a blood transfusion to get her energy levels back up and prepare for the next phase of treatment.

For those who have never seen a blood transfusion, it looks like an IV of blood ... :).  Alhamdulilah it seemed like the blood had a quick impact.  When she went into the clinic she was weak and tired ... Afterwards, she was able to walk out on her own feet.  The funniest moment was Zaynab's reaction to the idea of getting blood from some unknown donor.  She didnt like the idea at all and the question she most wanted to know was whether the donor was male or female!  She didn't want the blood if it was from a male donor ... :). I was able to comfort her by telling her whoever it was, they must have been a kind and caring person to donate their blood to those in need.

This Friday morning will be her bone marrow biopsy.  Please make duaa that it goes well and that it shows the cancer in remission.  I ask you all to make duaa and for those who can to donate sadaqa to the charities above or to any other worthy cause. 

Zaynab Skyping!

     Thanks to Musab who managed to solve the weak Internet signal in Zaynab's room, I've finally been able to Skype Zaynab and see her high spirits & beautiful smiles! She told me she's very thankful she's out of the hospital and back home where it's more comfortable, clean and cheerful. I got an exclusive peek into her beautiful newly decorated room which she centered in a cute kitty t-shirt. I almost saw myself in the cool mirror stickers on her wall! There was evidence of the home-schooling efforts in her room, too; she was actually taking a break from her homework when we talked. ( So teachers: this kid is serious!).
     My kids were delighted to see Zaynab and grandma. We has a nice long talk- full of toddlers' interruptions! She caught up on our recent vacation to Sudan, with my daughter, and told us how she loved the raspberry lotion she was using. She was glad to be back home with family around her and freshly cooked meals. To her delight, the doctor had given her thumbs up for the Chinese food she had been craving for weeks,(but had been prohibited from due to fear from bacteria in catered meals).She enjoyed her Friday, Chinese food day, but was a bit disappointed when she came looking for the leftovers on Saturday and found that others had enjoyed it too!!
     Zaynab spends her day doing homework, reading, resting,and chatting.She was telling me she gets really hungry with all the medication and needs to snack frequently. Thanks to Mom & Dad she's drinking lots of  delicious, homemade, healthy- sometimes green- smoothies. She had one as we talked and it looked great!!  She has recently started to feel light headed and dizzy. This is due to the low red blood counts. She will start to take iron supplements and everything else mom and her could think of, in order to increase her hemoglobin, regain her strength and avoid blood transfusion. Alhamdilla she was feeling better than the preceding days, which she was very weak in.
      Friday, she will be going in for the bone marrow biopsy. We pray that goes well and the results are better than anticipated. According to Zaynab the week that follows, will be chemotherapy- free; the doctors will be looking into the results of the biopsy and planning the next phase of treatment. She hopes she'll also be taking a break from the 8 fast dissolving Prednisone tablets she has to take everyday! Zaynab will also have her braces removed during that week as a precaution from catching any bacterial infection.
     Zaynab is  is very grateful for all the support and love she continues to receive. The hospital visit from her teacher & friends in the previous school has left a special heartwarming effect on her. She mentioned that a couple of times she opened Skype, but was only lucky enough to meet Aneesa (who she loves).  Zaynab is glad to have the Internet connection available in her room and looks forward to replying to the posted comments -which she actually reads- so keep them coming!!
 
 Love you Zaynab..Our prayers with you. Till the next time,

Auntie Elham on behalf of Mom..

Day 19

Salaamu alaikum

Zaynab is gradually regaining some strength and she has begun going for short walks alhamdulilah.

These days she is mostly dealing with the side effects of the chemo.  Stomach pain is the thing she complains about the most.  Luckily with her starting home schooling this week we are forced to get her back to a normal sleep schedule.

Thanks to the amazing support we've gotten from our friends and family we are making lots of progress.  Thanks to all those who have helped out in so many ways!  We are truly blessed.  Also, having both grandmothers and aunt Esra has helped tremendously!

Zaynab is 10 days away from finishing the first phase of treatment they call Induction.  Induction is the first phase of treatment where they expect by the end of it that her cancer should be in remission.  That doesn't mean its gone, more like it goes into hiding ... :).  But its the litmus test for how effective the treatment is working.  So please keep us in your prayers ... in 10 days from now they will do a bone marrow biopsy to determine the effectiveness of the chemo so far.

We are schedule for another chemo dose this Friday insha Allah.

Salam for now.
Musaab

Day 14 - What is normal?

Salaamu alaikum.  Our apologies for not posting in the last few days.  The past few days have been very hectic.

I am writing this post as I am waiting for my mom to arrive from Sudan, I can actually hear the clock ticking ... :).   We are excited to have both grandmothers here!

Alhamdulilah, Zaynab is slowly improving.  She still has sporadic pain and some nausea.  Since being discharged we have been trying to re-establish a sense of normal.  That has been really difficult to achieve.  Despite all the help and prayers, I would be lying if I said it was easy.  Alhamdulilah.  Sleep is still a luxury ... :).  Between Zaynab and Yusuf its not easy to get more than 2 hours of sleep at a time.

Zaynab's vacation from school is about to end.  She will be starting this coming week with a teacher who will be coming to the house three times a week for a couple of hours at a time.  She is only partly excited about that of course.

Zaynab just had another chemo treatment today.  Alhamdulilah it went well.  She is beginning to have some nausea and fatigue and that should last a couple of days.  Hopefully it will be over by the end of the weekend.  She continues to be prone to infection so we have her walking around the house in a mask ... :). 

Thats all for now, we will try and make sure to update the blog more frequently.

Welcome Home Zaynab

Alhamdulilah, the doctors today allowed us to go home.  Like Matthew indicated, her immune system is pretty weak and will be that way for the next three weeks at least ... and then off and on afterwards throughout the 8 months of treatment.  The doctors have warned us that any infection and she's going to have to come back and stay in the hospital until it passes.  For that reason, we ask that instead of visiting please keep her in your thoughts and prayers and we will try to keep updating the blog.

BTW ... She was *very* happy to be leaving the hospital and was excited to see her younger siblings.  Just being home even for the last couple of hours and you can already see the impact its had on her emotional well being and we hope it helps her recovery!

Thanks again for the love and support.

Well wishes and visiting

To all of Zaynab's supporters... the family is getting a ton of visitors.  This is wonderful for Zaynab, but also provides a bit of a challenge for them.  Zaynab is now immunocompromised and each visitor adds just a little risk to getting her sick.

I'm going to play the part of the "scrooge" and ask that everyone pour the love and affection out with all the support we can, but let's make sure to limit somewhat our visits to ease the family somewhat and to ensure Zaynab isn't exposed to anything.

Thank you all,
Matthew

Day 8 continued

Alhamdulilah Zaynab's chemo went well. She slept through most of it. She woke up towards the end feeling some pain. Fortunately that didn't last too long and they were able to put her back on the morphine pump. Alhamdulilah...:) Then she had something to eat and is sound asleep now. The Dr talked about getting her pain undercontrol using oral meds so we can go home. Hopefully they figure that out soon. Musaab and I both were taught how to take care of her IV line at home. So not much holding us up here. Zaynab and I spent some time reading comments on the blog. She told me that it made her feel as if people were here beside her. I am so happy to see posts from family and friends all over the world. Special thanks for family posting in Arabic it will give us an opprotunity to practice. My love and salaam to all

Day 8

Zaynab just had a lumbar puncture where they took a sample of her spinal fluid for testing.  They also injected chemo intrathecally (medicine injected into the spinal space).  In talking to the doctor this procedure was developed to ensure that the cancer doesn't resurface in the central nervous system.

As I am writing this, they are preparing to give her two more chemo meds through her IV.  Unfortunately these meds cause nausea and vomiting ... so please keep her in your prayers.  We are praying that she gets the benefit from the meds while avoiding the negative effects.

We have been reading the blog posts and the comments to Zaynab and she has been really happy to know so many people are thinking about her.

Yesterday, Zaynab was ecstatic that her friends from her old school visited her ... she played Clue with Annie and Alex.  She got a custom made bear from Kelly with a recorded message built in every time Zaynab squeezed it!  She also got another visit from Mrs. Yoshikawa who brought her tons of cards from the 5th grade class at her school. It will take a couple of days to read all of them. Thanks JFS!

Thanks again for all your continuous love and support.

Eyman

Day 7- Friday

This morning I was fortunate to be able to spend some quality time with Zaynab.  Unfortunately though, this will have been it for me for quite a while now.  As she is experiencing leukopenia, I told Zaynab and Eyman that I will not bring my germs (even though I am not sick) with me to visit until I get the clear from them once she is discharged to her home.  We’re all hoping she is able to go home Sunday, but due to recent, sporadic pain, she may possibly have to remain at the hospital slightly longer.  (Zaynab, I’m praying your pain gets under control so this will not be an issue on Sunday.)   

I also had a nice chat with Zaynab and her dad about her new diet.  After bringing her many unhealthy, sugary sweets, I realized they will be limiting all of this in their home.  The family is going to try to make some changes in their diet, and I am thinking I need to seriously do the same thing in my home!  

Zaynab was also very excited to tell me her grandmother came on Wed. and that her other grandmother and cousins are coming soon too.  InshAllah she will be having some nice rest and homemade, nutritious food at home with all the family soon.  

Tomorrow, Zaynab will be having another lumbar puncture (hopefully early in the day so she can eat a nice brunch afterwards).  I will be praying the test goes well and she is able to handle the chemo as well as she did the last time she had this test done.

Zaynab, I really enjoyed being able to chat with you about instruments, books, food, family, school, etc., etc.  InshAllah may your pain get under control and test go well tomorrow so you can return home soon.

Lots of love and duas!

Day 5 & 6

Mashah ALLAH today Zaynab looked great. Both Musaab and Eyman told me it was one of the best day she has had since her diagnosis. Zaynab went for a walk outside and also walked around in her ward. She also finished Anne of Green Gables in just two days :-)

She is waiting to finish the remaining three Harry Potter movies which I think she will start from tomorrow. She did start a new medicine and Alhamdulliah she adjusted to it really well.

Zaina and Zaynab also got to spend quality time together and they talked about how they can trick their dad's (me and Musaab) in putting nail polish on them :-) Yeah right!! as if that will ever happen.

There have also been a slew of other visitors that have been coming daily to see Zaynab and today she got a surprise visit from one of her old school teachers. Everyone in her school also sent their best wishes and speedy recovery prayers for her.

Her grandma (Musaab's mother) also gave her visit straight from the airport and Musaab told me that she was excited to see her grandma. For the last couple of day's Zaynab had been asking her dad to bring her iPod from home, but he could not find it and today she got a new one as present from one the visitors (can't remember the person who brought it). Now Zaynab is connected and will be responding back to her email and checking her blog daily. So you all be better putting loads of comments on her blog.

Fundraising efforts info

Salam and Hi,

I just wanted to send a quick note to say thank you to everyone who is supporting the fundraising efforts. Thus far, on day 5, we have raised $2700.00 for the Leukemia & Lymphoma Society...Our goal for this charity is $50,000.00....as well as getting as many people to actually join us and participate in the Light the Night walk on Oct. 20, 2012......For Charity:water organization, we have raised $1920.00. Our goal for this charity is $20,000.00. That amount will give water to 1000 people, 200 families, and 4 communities. God willing, we will be able to get these goals reached. Here are the 2 links:

http://pages.lightthenight.org/sj/SanJose12/TeamZaynab

http://mycharitywater.org/Zaynab

Thanks again, and may all your efforts be rewarded now and forever,
Nancy