5th Chemo Treatment - 26th Sep

Sam started the 5th Chemo on monday afternoon.
He has been taking the treatment very well.
He ate lightly for his meals, and also drinks regularly.
Thanks for all your prayers.

We have just started the Day 2 treatment as I write.
Pray that the next 2 days will be equally smooth and so that he can be discharged on thursday.

Home after 3-day stem cell harvesting stay...

Thank God,  the stay in the B2 ward for stem cell harvesting turned
out well.  Somehow, we can find courage and companionship
in the midst of the noise and babies cries. We encountered the 'real warriors'
there eg a pakistan couple who sold their land to be here to seek
treatment even though they were told the chances are very slim 10-20%.

Managed to meet the surgeon. However, was distraught to hear from him
that he will see us only after all 6 chemo are over. He added that we need to
maximise on the remaining chemo to save as much as possible.

Please support us in praying that :

- God will be merciful that the remaining 2 chemo will be effective in
   shrinking the tumour especially away from the 2 nerves.

- Samuel still rejects hospital food and he is preparing not to eat again.
   Pray against this deception.
  
- Next Mon, we will be admitting for the 5th chemo and potentially we need to
  stay in a non-enco A class ward.  
- God binds us to Him and our family together even more to walk in faith and truth ...

postponement of stem cell harvesting ...

Today Samuel's blood count was too low for stem cell harvesting.
As a matter of fact, all his blood types have dipped.
HB was so low that encologist made him go through a
blood transfusion today.

Now back home ... tentatively
to admit on Wed pending more positive blood count then.

Thank God, encologist confirmed that his lungs are cleared based on CT report.

However, we can only know the outcome of the latest MRI report
pending our appointment with the surgeon (a visiting consultant who comes in
on Wed only) on 5th Oct earliest. In between this appointment, there will be
stem cell harvesting and 5th chemo.

Please support us in praying that :

- there will be no further delay in treatment, Samuel's blood count can recover
  on time and no more complications

- if God is willing and in HIS timing,  that we will be able to meet the Surgeon earlier
  (possibly this Wed) to review results and even discuss surgery to remove the
  primary tumour from his right calf if the condition is favourable already

- Samuel to be obedient enough to sleep earlier and not reject hospital food
   today, he insists on the home cooked food only

- God binds us to Him and our family together even more to walk in faith and truth ...

 

2 days before stem cell harvesting

Next week, Samuel needs to go for peripheral stem cell harvesting
I reviewed the information in the following link with him today :

http://www.gosh.nhs.uk/gosh_families/information_sheets/peripheral_stem_cell_harvest/peripheral_stem_cell_harvest_families.html


He has requested everyone to pray for 
- earlier discharge as we need to be admitted again the following week for 5th chemo.
- smooth insertion/removal of vascatheter . Specifically against any vomitting from the anaesthetic used. He asked for “painless” insertion and removal as the removal of the stitches from his right calf was quite painful for him.
- courage for both mum and son to overcome fear of sight of blood flowing in and out from peripheral machine.

As with regard to his food probia and computer addiction, a very kind sister has encouraged me with the following :

“Pertaining to his attitude regarding food, besides praying against deception, I know of a practical way to help him. But it may not be feasible because he refuses to be in the children cancer b2 ward . When he sees other kids also eating hosp food, maybe he will not have so much phobia since he will not be the only one eating it. There are kids who stay there for 4 mths in a stretch, and they have to put up with hosp food too. When he sees that, maybe he will feel that his short stay is bearable as compared to other kids.

Pray that God will take away that phobia and He will sustain his appetite during his up-coming stay.

The same with the comp addiction, being in isolation cuts him from other patients whom he can otherwise play/chat with. I find this to be a great advantage for their social/emotional wellness when they have other patients to relate and play with.

Let's pray that God will remove that addiction and generate more varied interest apart from that.”

On Friday, we have received his latest MRI and CT reports, unfortunately the encologist is not available to explain the results to us.

Extracts from CT report :
Impression : No significant abnormality detected The previously noted tiny right lower lobe pulmonary nodule is no longer seen on the current scan. Hopefully, God has answered our prayers to totally remove the nodes from his lungs

Extracts from MRI report :
Impression: Known Ewing’s sarcoma right proximal fibula Stable intraosseous component with interval reduction in the extraosseous soft tissue component as well as the enhancement in the surrounding muscles.

Apparently, only the surgeon(a visiting consultant) can give us a detailed explanation on his MRI scans. We have not met him ever since our 1st consultation prior to 1st chemo.

Pray that next week during the stay, it can be arranged for us to hear from him
(with 2 MRI reports now).
Pray that primary tumour from his right calf can be removed as early as possible without compromising the functionality of his right leg. God will also heal the big fracture in his bone.

Day 3 at Home

Today, Samuel's white blood count has dropped to acceptable level. Friday, FBC again. However, was told by the encologist that whether surgery takes place earlier or not, we still need to complete tentatively the14 courses of chemo treatments. 4 down another 10 more to go. Was feeling burnt-out especially the next 2 weeks there will be 2 more rounds of hospitalisation again : - stem cell harvesting; - MRI, CT scans and 5th chemo. However, as I mediated upon the psalms 23 : The Lord is my shepherd, I shall not be in want ... Surely goodness and mercy will follow me all the days of my life. He comforted us with evidence of His presence in this journey : - I have the chance to appeal face-to-face with assistant director who happened to be at the centre about the ward A situation; - very last minute('miraculous') availability of MRI and CT scans ( was told earliest is last monday of this month, if not will be next month ) - availability of transport back home by a friend(who happened to be at hospital) - sister in law who had offered to cook lunch earlier in morning (not knowing we will be late) - a neighbour who happened to know the surgeon just dropped by to encourage us. Thank God for all these blessings and thank you for partnering us in this journey ...

Day 2 at home

This morning, the FBC (Full Blood Count)indicates that white blood count was too high(beyond normal high). Thus, need to monitor very closely ... instructed to go for another FBC and consultation with doctor tomorrow morning. Pray for smooth progression of this stem cell harvesting journey Pray for Samuel - to have healthier appetite - to increase his fluid intake - against vomitting as thus far he has vomitted 2 times. We have decided he will be admitted to a B2 enco ward (as all equipment and experts are there) next week which pose a great challenge for us. Pray for Samuel to overcome his probia as hospitalisation equate to starvation for him. Pray for good and encouraging companions in the shared ward. Pray for God to help our family to allow HIM to be in every part of our journey. He will put in place and restore all things right before HIM.

Back Home after 5 days

Discharged finally on Sunday, 6pm. It's actually against the doctor's instruction, as she is concerned that Sam is not properly hydrated. We told the doc that Sam will be OK once he gets back home. Truely, and thankfully, Sam is recovering fast. He started eating and drinking as usual, and the vomit spell disappeared. Thank GOD. This week will be a busy week. GCSF injection every day to be adminstrated. We have a neighbour who is a nurse in CGH, so she is helping out. Alternate day, we have to be back to KKH by 9am for blood count measurement. This entire process is to prepare for re-admission next monday for the Stem Cell Harvesting. PRAISE GOD that Sam is healing.....it's still a journey. With the 4th Chemo done (out of 14), we have completed slightly more than 25% of the journey... Long way to go though......

Day 3 & 4

It has not been easy on Sam for the past 2 days. He has frequent vomits and is weak from the lack of food and water intake. The good news is that we are approaching the end of the treatment. The last dosage of the drug should be administered this morning. We should be discharged by 4pm today (Sunday), according to plan. Certainly looking forward to going back home. This week of treatment has been tough going.

Day 1 and 2

Yesterday was pretty unpleasant for Sam. He threw up many times from the effect of the sedation drug administered for the BMA process. The boy refused to eat and drink throughout the entire day/night. Thankfully, he woke up feeling better this morning. He is now on light diet, chewing a couple of energy bars (chocolate coated to wet his appetite). The 4th chemo treatment started at 2pm today. Sam is now cheerful, reading his Jackson Percy and Artemis Fowl..... The next 72 hours will be a journey. Please pray that God will provide Sam with the strength, endurance and no more vomiting throughout.